Re: Sinus Surgery-Helen

[Guest guest]

Helen,

I can only comment on the sinus surgery (we have not had to deal with any

broken noses here, poor Matt . and Mark both have had sinus FESS

surgeries. Mark had it once (and to be honest, in hindsight I don't think it

really did anything for him...his was all due to his PID and I doubt that we

would have him undergo sinus surgery again). was a totally different

story and he has undergone 3 sinus surgeries (all FESS). The first and

second surgeries were the most difficult. The first one took 3 1/2 hours as

had developed osteomylitis. The second surgery had two very, very

large mucoceles that were removed and he had osteoitis (not to be confused

with osteomylitis) and this surgery took about 3 hours, as well. Both of

these were needed at the time. The third was probably not necessary, but he

was undergoing another procedure so they decided to take a look due to his

chronic infections that persisted. I know that you are looking more at what

to expect beforehand and immediately after, but I need to be honest and tell

you that sinus surgery does not always give you the results and answers that

you are looking for or hoping for. In 's case the first and second

surgery were absolutely necessary but did not bring about a good relief from

the chronic infections. I realize this is getting a bit " windy " here, but it

is often times thought that one source or cause is the culprit to chronic

infections and it turns out (as in the case of ) that another problem

exists. Often times, allergy. Again, it is important to remember that

does not have PID and we cannot compare him to Mark and Matt, who do have

PIDS. It is a well known fact that certain types of PIDS bring about chronic

sinus issues. It is important to recognize however, that little children who

fail to respond to allergens due to their age and lack of exposure can often

times have chronic sinus infections and even be thought to have a PID (such

as the case with ) but are due to severe allergies that have yet to be

identified, as was the case with . So my friend, sinus surgery helped

initially, but due to the severity of his allergies....the tissues in

his nose and sinuses continue to be swollen on most days and act as a host to

many bacteria. We therefore, now treat the allergies aggressively and treat

the infections as they come....does this make sense? With Mark, surgery did

not help because of the type of PID that he has. Mark's battles with sinus

infections are just as strong now as they were prior to IVIG. This was not

always the case, we did have a nice long " honeymoon " period there for a

while. Not sure why the change, but we are told that this is not that

uncommon with this type of PID. As far as recovery, did pretty well

all three times...both boys were quite nauseated and it is common to have a

bloody drainage from the nose post op even for a few days. There are warning

signs to watch for...vision being one very important warning sign. Make sure

that Matt really takes it easy for several days post surgery. He may even

have a headache...both of my boys did, we are not sure if this was from the

surgery or the anesthesia drugs. It is good that you will be getting

biopsies...are they going to do a cilia biopsy? If not, you may want to ask

for one while they are in there. This is a very important thing to know. It

is possible that Matt could have a problem with his cilia either from chronic

infections, from his PID or from a cilia defect. If they are in there

already, they should check this out. 's cilia were affected secondary to

his chronic infections. One last and final note, we were told to have the

boys use Ocean as often as they could stand it post surgery. It is probably

the last thing that they want to be doing, but it really is important, check

with your ENT about this to make sure that this is appropriate for Matt.

Also, make sure that Matt does NOT blow his nose for several days post

surgery, unless otherwise instructed. I would inquire about the use of Ocean

and/or hypertonic saline washes from your ENT to see what they recommend for

the long-term. Our ENT told us that they do much less sinus surgery now due

to the high effectiveness of the hypertonic saline washes that they

prescribe. Good luck to you and Matt and please know that our thoughts will

be with you on the 5th for a positive outcome. Keep us posted and hang in

there.

Autumn (Mom to Mark Cd5-Cd19 and )

[Guest guest]

Helen,

I have to agree with some of the things Autumn is saying. The

problem we have run into with Autumn (our daughter) is not that we

need surgery; we need to reduce the inflammation in her nasal

passages so that the medicines work.

The nasal washes we have been trying since we returned from Colorado

have given us a 4 week reprieve from the heavy duty meds we were

using. Granted, our medicine regimin is a little long (we write it

out so we don't forget a step!), but the improved health is worth

it. This is the longest Autumn has been off antibiotics since she

was 18 months old!!! (She does take Amoxicillin as a prophylaxis,

but that's such a low dose, I almost don't even consider it part of

the " cure. " )

I have read so many scary things about sinus surgery that I am almost

adamant that she won't have it--at least not until all the rest of

her sinuses mature and nothing else works. I am fearful of damaging

the cilia in the nasal passages and after that, her sinuses will not

recover.

Since we have started the nasal washes, the inflammation in her nose

is all but gone. We haven't had the stuffy nose, the persistent

headaches (yes, Maurita, there definitely is a connection) or any of

the other " symptoms " that went along with chronic sinusitis. The

Nasonex & other meds actually work now! I never thought I'd see that

day.

I can't tell you what to expect; just wanted to let you know one of

the reasons we won't be trying sinus surgery--at least not for a very

long time.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies) and #3 on the way!

P.S. I don't have actual experience with broken noses--we thought

Tabitha had one, but it turned out to be just a very bad bruise.

Sorry I can't help you there either!