We’ve both been eagerly anticipating my sinus appointment today for a couple of weeks now. It’s been almost 7 weeks since my last appointment with Dr. Tabor when we scheduled my surgery for June 13th. I’ve been on vancomycin for over a month using the pulsating Pari Sinus machine that precious few people have. On a side note, that device is a dream, and I’ll be writing up something about it very soon.
We scheduled the visit today to determine if the abx were working enough to avoid major surgery. He’s not entirely certain that operating will relieve my headaches, but is “willing to give it a try.” I have to chuckle at that as a services professional myself. Of course, it will help some, but it might not be an all-in-one relief. I know what he means, which is why I am willing to go for it, but not if we see clear improvement with meds.
Interesting phenonmenon
Then something interesting happened when I was in Chicago for 4 days: I didn’t have a single headache, at least until the last morning… but that may have a pretty traceable cause. I was talking to Sue one day after I got back and told her about that strange lack of head pain and she immediately said, “allergies.” There seems to be enough of a reason to believe that our location here in piney, grassy North Tampa has been causing my extreme headaches due to allergies. We will soon see if that theory holds true as we head to So Cal on Tuesday for a week. If I don’t have any headaches for a week, we’ll have to figure out an allergy-related cure to my pain.
Back to the appointment. Yesterday morning while I was still doing my treatments, I got a call from a blocked number. It was the doctor’s office saying that won’t be in clinic [today] and will take my pre-op appointment on the first Tuesday in June as a appointment before sending me over for labs for surgery. First, I was really, really mad that after weeks of waiting, he tells me the day before my last chance to get sucked out before vacation that I can’t see him. I called the scheduling nurse and left a message to call me back if I could be seen Friday or Monday after his surgery time.
She called back in the afternoon, but I was on a call with a client, so Beautiful took the call for me (Thanks, Babe! Having you around is awesome!) and told me that he had already left down for a family emergency and would be back in time for surgery Monday, but would be operating all day. Alright, at least it was an emergency, so now I don’t feel bad about it, because I was fuming earlier that I could have gone any day this week or last week and been better off. We were even debating calling Dr. Seper to see if I could slip in for a sucking since it wasn’t really my decision to switch doctors as much as it was clinic’s choice to work with a doctor out of their hospital. I don’t think it’s necessary, given how much work I have to do before we leave, but maybe Monday would be a good shot in the dark.
So, all of that said and done, we are thinking we should call scheduling and cancel the surgery because we were supposed to have an opportunity to inspect my progress on abx. If we decide I still need to go under the Black and Decker, then we can do it as soon as he has an opening because I don’t have any travel plans for the rest of summer.
What would you do in my situation?
Hmmm… I sure like the idea that it might be allergies and treatable from that angle. I guess, if I could tolerate the pain while exploring that angle, I’d wait on the surgery since there’s always some risk involved when in the OR. But that’s just me. 😉
I’m just not all that confident that we can eliminate allergies as a source
of issues living here, and moving away from this clinic isn’t my notion of a
good idea.
Allergies can be worse than the flu to some. Especially in the Ohio Valley! I know when we were on vacation in Gulf Shores at the end of April, John felt better than he had in a long time. The salty air seemed to really open him up. He had some coughing spells, but only the first day or so. I guess that was the oceans way of working things out! I am not a major allergy sufferer, but in 1997 when I visited Nevada, I noticed a huge difference. I hope the California air is good to you and the smog doesn’t effect you! I would see how you feel before getting your head hacked into. 🙂
Thanks. That’s 2 votes for “wait and see.”
I have similar issues with my sinuses. I have been through sinus surgery before and got the same “we’ll see how it goes” mentality. I was chronically JAMMED UP with crap cause they would not drain properly. After sinus surgery there was an immediate and lasting difference. I still have sinus infections and WRETCHED allergies but the key is getting it to drain out so it doesn’t get impacted and festers there, making it that much worse. I would DEF recommed having a specialist run an allergy test. I am VERY allergic to pollen, dust, mold and TREES! I can’t even have a real Christmas tree in my house anymore, much to my husband’s dismay! 🙂 I take an allergy pill everyday, and that helps, but recently I have been going to acupuncture once a week for my allergies and I have seen a HUGE difference!!! I was confused for the first few weeks as to why my allergies seemingly went away, and then I was like “holy crap! its working!” and its been amazing the difference.I would def go with the surgery, but then after that adjust my maintaince routine. Have you ever heard of salt therapy? (Think hypertonic saline on steriods) check out http://www.saltroomorlando.com. My pulmo has been referring many of his CF patients there last year or so and many are talkin about what a huge difference its made for them. Don’t know if you have anything like that in Tampa, or if you could maybe come over to Orlando, but might be worth lookin into. My sinuses have been much easier to deal with for a while now! Good luck!
We are absolutely forbidden to go to the salt room in Tampa. They hit us hard trying to get us to go. I went to the opening event and then told the docs and they freaked out. There’s no infection control there. You can’t just have CFers walking around and then going into a room like that. The salt room claims that it is sterile because of the high salt content, but that 1) can’t be true and 2) doesn’t matter in the lobby. I’m a lot closer to the beach than you are, so that’s where we go. 😉
I’d wait until you can have the follow-up that was the original plan. I don’t hesitate to have surgery when it’s needed, but if there’s a chance it’s not, why plow ahead?
I had a similar “ah-ha” moment about my allergy sinus headaches. I went to a conference in Tucson and on the third day thought, “What’s different? Something’s different!” Then it dawned on me I hadn’t had my normal sinus headache. As soon as I got off the plane at DFW, whoosh, the humidity slapped me in the face and the headaches returned.
The votes are rolling in for holding off if I can take the pain. I’ve lasted this long… maybe feeling fine for a week will be just the respite I need to last until we decide what to do w/ allergies vs. surgery.
Allergies are a huge issue for me — nasal irrigation twice daily is the solution.. but im so non-compliant with it b/c its not pleasant. I live in Cali and I have huge issues with allergies, so you may or may not experience relief… depending upon what you’re allergic to.
I can’t do rinses every day. I’ve tried with each surgery, but I feel the relief get less and less with each passing week, so I quit… especially since it makes such a splattering mess and my nose drains and burns a bit for the next hour. Sometimes it’s just what I need, so I do it anyway.
Aidan just had his 9th sinus surgery and the surgeon said ‘they were so bad. it looked like they’ve never been touched’ his last surgery was only 3 months ago by the same surgeon. i am at my wit’s end!!! we do sinus rinses everyday, all day but all of a sudden, everything gets blocked and we are back to square one. we’ve tried sinus nebulizers but not the one you have. i did see it at the national convention. do you like it? does it seem to be working? did you have to pay for it or insurance?
I love it and insurance did cover it. Clinic should be able to get it for
you through PSI. What is he taking for his headaches? I’m allergic to NSAIDs
so I can’t take Motrin or anything like that. Everyone seems to be pointing
at allergies – where do you live?
Ok, for the benefit of all, it’s time to put my Fatboy coach hat on… this
isn’t pointing the finger, but pointing it out in general… for all
parents:
I’ve noticed a sense of despair in quite a few of your recent comments and
Facebook statuses and can’t help but think that Aiden is picking up on your
feelings. I’m not saying you’re saying things to him or in his presence that
is causing this, but children pick up on all sorts of things – like when
they blame themselves for their parents’ divorce. I’m also not at all saying
it’s not reasonable or okay to feel that way, I sure as heck get desperate
when I get sick repeatedly, but children need to be protected from their
parents’ despair. It’s too big for them to handle their feelings if they
realize you have lost your footing, too. Keep up an illusion of control as
best you can and just be his mom. Rub his head when he’s sick, Get him what
he wants to drink, and just baby him when he’s really down for the count and
then kick his butt into gear when he’s better.
Other readers will attest to their attitude rubbing off on their kids, so as
hard as it is to see him so miserable, you can try to remain calm and just
be an assuring mom in his presence – it’s okay to break down behind closed
doors. I don’t ever remember being faced with my parents’ heavy medical debt
or loss of my sister as a part of my list of troubles. Blockages, surgeries,
and hospital stays, sure, but those were all things I was experiencing
personally.
Let kids be kids. Keep me posted on how he does in the next few days, though
I imagine I’ll see on Facebook. 😉
My despair is not in front of him but I am desperate behind closed doors. He has lived in pain for over 5 years despite traveling the US for the best treatments. We don’t baby him at all even when he is accessed and doing hard core IVs for weeks at a time. The treatments don’t bother any of us; it’s the pain and quality of life that do bother us. Aidan happens to be brilliant with an IQ in the 140’s; he is a very unique kid and we very rarely even talk about CF unless he wants to. He is responsible, does all his own treatments, he’s amazing. But he does hate CF and he doesn’t get it from me. For years, I downplayed it and that pissed him off even more. Now I admit that it sucks but that is could be a heck of a lot worse. I think my Facebook statuses are asking for advice. I am looking for answers since doctors have given up trying to give them. Aidan reacts badly to anesthesia, he’s allergic to a lot of MRSA drugs and now the ENT tells us to get a pain control specialist. As a mom, that totally sucks. Does Aidan know any of this? Of course not…We live day to day and Aidan has an amazing life despite its challenges. I happen to have a 6 year old who doesn’t think like a 6 year old; his psychologist has given us advice but warned us that kids who are highly gifted with superior intelligence are a complete challenge. That is what we have in Aidan.
Good to hear – I retract that advice from you to let it stand for others
then. 😉 Some of your description reminds him of me at that age (I didn’t
test quite that high, but I was in gifted classes from the 1st grade on
through 6th). I’ll really have to rack my brain to remember much of some of
those years because they are so deeply repressed – so not kidding.
Advice… everyone is telling me to look into allergies as a cause, so have
you ruled that out? Have they done major bone opening (not just windows, but
doors?) for drainage? What about Nasonex after surgery for swelling after
the blood and goop are cleared from rinses?
I’m stuffy every morning, but the PARI Sinus does a great job opening up
things, although I didn’t like it for the first couple of days because it
brought tears to my eyes. I was so stuffed up that it was vibrating my whole
head. Now it’s much better and feels like a sinus massage, if it’s even
possible to imagine that. I don’t think it is. 😉
As for meds, it might be time to consider low, maintenance doses of
narcotics like Ultram or Vicodin, I suppose. Have you asked the docs about
something super strong like that or is that not something they are willing
to do? As long as you keep it to one dose per day like you would a Tylenol
that actually did the job, he shouldn’t have any issues – I go off it
whenever I can just to be sure I’m not dependent on anything. The relief of
pain goes a long way to improving my attitude and outlook on the worst days.
I am going to try and get the pulsating sinus one. We’ve tried two so far with minimal success. Actually, no success. ENT suggested trying Pulmicort this time instead of the antibiotics. We’ve had him tested for every allergy out there when he first started with sinus issues at age 1. But everything came back negative. His ENT said that his sinus anatomy is just very small combined with no mucilliary clearance and MRSA..bad combo. He takes Aleeve twice daily while waiting for surgeries. ENT said as he gets older and can tolerate ‘cleaning outs’ in the office, he will be a kid that will need it every 2 weeks. Until then, it’s just surgeries every 2-3 months. Any ideas how to help him with his anxiety? he has a port now and is great 98% of the time with it but when it comes to monthly flushes or accessing it, he just freaks how much he hates CF and his life. When he is healthy, he is a different child–happy, sweet, fine with CF, tons of energy, crazy social, a total leader but when he feels like crap…it’s a different story.
I don’t see why monthly flushes would cause a freak-out. It hurts less than
a blood draw unless it’s the same spot as an access in the previous couple
of days. If it’s anxiety at hand, Xanax works great and is very small doses
and very quick to leave the system, too. It works within a couple of minutes
and is usually mostly clear in under an hour.
Freaking – hating his life… does he have hope? Anything to live for?
Anything that CF isn’t going to stop, like becoming an astronaut? Freaking
out is a sign of too much unknown and/or not having anything to look forward
to. With the dichotomy of healthy vs sick, there could be some behavioral
things there – smart kids can get stuck in the same reactions to past events
even though they turn out okay. If he’s so advanced, maybe he’s just being
an early teenager that way. Sounds like a reasoned tantrum, if you get my
difference between that and one a normal 1st grader has.
Maybe it’s time to expose him to older CFers online who are doing fine in
their teens, 20s, or ones your age. Growing up, that wasn’t even an option
for me, because they almost all WERE dead by 18, thanks to CF camps. I dunno
– that’s all I’ve got.