Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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/ Common Variable Immunodeficiency Support Group

Sinus surgery

ATOWifeofJason
ATOWifeofJason
I have an appointment with an immunologist June 20 (8 hours from my home) but for now I have the diagnosis of hypogammaglobulemia. I received an ivig infusion February 22 of 40 grams and had a ct scan 3 weeks later that showed tissue blockage of all the sinuses on the right side. So they gave me 3 weeks of bactrim ds and did another ct scan the day after I finished. It was worse now the left side is clogged and the right side is worse. My hemotologist oncologist is refusing to even ask the insurance for more ivig and they don't want to give anymore antibiotics so they said they want me to have sinus surgery since we have been fighting these infections for over a year. Just wondering if anyone has had this surgery. They can't say that the scarring won't return because of my past experiences with recurring infections. I am inclined to wait until after I meet with the immunologist. Any experiences or advice will be appreciated. Thanks.
kelli1b
kelli1b
I had turbinate reduction several years ago and it was AH-MAZING. To be able to breathe so clearly was so surprising lol. It wasn't very painful at all and I think I only missed a few days or a week of work. The worst part was the packing up my nose and then removing it myself lol. IF it were me I would hold off on any surgeries until I saw an immunologist. A dx of hypo should immediately qualify you for IVIG monthly and the fact you aren't getting it is so shocking. If the person recommending surgery is the same one refusing treatment, I would wait and see the professional. Good luck!!
PacificDesigner
PacificDesigner
Hi there, I would recommend against surgery. I too have battled sinus infections for years before my diagnosis, and neti rinsing in most cases in conjunction with IVIG and antibiotics is the most effective. I have also found that Allegra helps a lot if there is an allergy component to the sinusitis.
deleted_user
deleted_user
Hi, I have had the surgery three times. If you have structural issues in your sinuses there is no way for the infection to clear. However, since you have a diagnosis of hypogl. you also need the IVIG. Kelly is correct in that you should be getting the IVIG. I have no idea why you are not getting both therapies. My surgeries all predated my diagnosis with CVID. I can say that the surgeries were a HUGE relief. Every time I felt like a new human. If you are that closed off inside you are not sleeping well or getting good oxygen saturation. I would go find a new dr., get the surgery and get on the IVIG. If that isn't possible, get the surgery!!! You will be so glad you did. Good luck!
Marilyn-Doss-Wright
Marilyn-Doss-Wright
I would find a doctor to start the IVIG and then get the sinus surgery. If it will not clear you need the surgery. I still need the neti rinse and nasal spray along with the IVIG to keep infections at bay, but I had one sinus that was the size of a 5 year olds and it needed to get enlarged and the opening to the other one was way to small. I rarely get sinus infections after my surgery while even with neti, nasal spray, IVIG and allegra I kept infections before. I also have no IgA so I need everything to be as perfect as possible structurally since I have no first line of defense.

Don't give up on getting the IVIG treatment you need. It will help you recover from the sinus surgery. Try to get it ASAP.
PacificDesigner
PacificDesigner
I would be very cautious about surgery before IVIG. You risk dangerous infection doing surgeries in a low IGG state. At the end of the day, if after IVIG, neti and Allegra you are still clogged up and getting infections, then do the surgery if you want, but I would run from any Dr. that recommends it as a starting point unless there are clear cut structural defects, but I still wouldn't go under a knife without IVIG. Do your own research, I did and what I learned is that no amount of surgery can clear inflammation and the success rate on sinus surgery is only in the mid 30% range, but it is lucrative for the ENT docs...
Marilyn-Doss-Wright
Marilyn-Doss-Wright
Pacific said it much better than me. Get the IVIG first because likely nothing will improve without it. Then, if the infection will not clear get the surgery if you have a structural problem.
deleted_user
deleted_user
I had sinus surgery before the Drs realized I needed immunoglobulin therapy. A CT scan showed I had no sinus space left due to the recurring infections. My ENT decreased my ethmoid and maxillary sinuses and my turbinates. It wasn't a fun few days of recovery, and even though I still got the recurring infections and needed to be on SubQ infusions, it helped tremendously. If you need surgery an ENT can tell from a CT scan and it will make you feel a lot better. It was the only way forward for me and I couldn't have cleared any infection with the little sinus space I had left. If you are used to doing the Neilmed sinus rinsing it will help speed up recovery post sinus surgery. Good luck!
deleted_user
deleted_user
That was my case. There was no room for breathing or for the infection to have antibiotics reach it. I did go on IGG replacements after the surgery because I was not diagnosed until about 18 months after the third surgery.