Friday, 1 October 2004

2004-10 (October) - Pre-Operation

The operation was scheduled in October 2004. 21 months after we discovered "officially" that she was deaf. She was 26 months old.

A preop/intake friday 1st of October, and the operation on the following monday, the 4th of October. We didn't stay in the hospital, but went home in between.


Finally - she was operated. And, as one of the first in Norway, she was offered bi-lateral Ci in 1 operation.... YES THANK YOU!!!!
We thought about that allready, and decided that in time we probably would do it.



Here's a picture of an X-ray with bi-lateral CI. (Not Lotte) It gives a good impression about the size of the actual electrode..... (n.b. the big round circles are the eye-sockets. Behind there you can see the small spiral of the electrode.. )


Why would we want bi-lateral CI??

It's controversial because the idea is that the first CI is really a major improvement. The second one has less effect. The benefits are obviously that with bi-lateral CI one can hear where the sound comes from. Also, noisy environment is easier to handle because the brain can filter out a lot of the noise. This is obvious when listning through a phone. Noise on the other side is heared clearly while the person on the other side might not be bothered.
But in addition, when one CI fails, the other is still available.
Obviously, it will be two operations, but I don't believe it's double the risk. Another argument against might be that when CI is implanted in both ears, there is no option when new techniques arrive. (Stemcell for example)
But, if this would happen in 10 years, the auditory nerve would not have been used for 10 years, and who knows what the effect of that would be.

So, when we were offered bi-lateral CI in 1 operation, we gratefully accepted.

1 comment:

Denise Portis said...

Advice, Hints and Suggested “To-Do’s”
From Those Who’ve BEEN THERE

This is a list of advice I have received through numerous listserves, emails, and online support groups regarding pre-operative and post-operative CI planning. This list is by no means exhaustive, nor does it negate the importance of individuals checking with the doctors about specifics they are concerned about in regards to their own medical history.

My thanks to all who participated by sending me ideas and advice. I wish I could give credit to everyone, but I literally received 100’s of individual pieces of information. Feel free to share this list with others, and hopefully all seeking information about CI surgery will find this list useful.

Pre-operative

1. Purchase things like triple-antibiotic ointment, hydrogen peroxide, cotton balls, q-tips, over the counter pain relievers, shower caps, gauze, Vitamin E capsules, and special shampoos (see post-operative below – some could use baby shampoo right away, while others had to purchase “no rinse” shampoos for a week’s use) PRIOR to surgery. Discuss the use of each with doctors and nurses. The important thing is to purchase these prior to your surgery date so that all is ready for use when you get home. If you know you will have pain medication prescriptions and antibiotics, get them filled before surgery so that you don’t have to worry about getting them after you get home.

2. Clean your house before you leave to go to the hospital! Wash all of your dirty clothes, etc. No one wants to come home from even outpatient surgery to a dirty, messy house. Make sure you wash your bedding so that you have clean sheets to snooze on at night! Find towels to place over pillows so that ointment will not stain pillowcases.

3. Purchase extra pillows if you think you will need them, in order to prop yourself up better at night. Some CI patients borrowed a recliner in advance if they did not own one. This enabled them to sleep comfortably in a reclined position after surgery for a couple of weeks.

4. Purchase healthy microwave meals, or freeze a week’s worth of meals in advance. This will Enable you to quickly re-heat food so that you do not have to prepare and cook meals immediately following your surgery. Put them in cheap microwaveable plastic containers so that you can throw them away and not have to wash dishes. Purchase fresh fruit the day before your surgery so that you have healthy snacks readily available. Wash them ahead of time so that you need only retrieve a piece from the fridge. Stock up on applesauce, popsicles which may help with jaw or throat pain.

5. Make a list of how to take care of your pets, plants, etc., and make sure a friend or family member has a key to your home in case you are kept overnight. This will ensure care for the critters should the doctors choose to keep you an extra day.

6. If you know you will not want visitors for a few days (especially as you cannot wash that hair of yours!) email or contact people you know may “drop by unannounced.

7. Most surgeons now require that patients get an age-appropriate vaccine (Prevnar or PCV7 and/or Penumovax or PPV23) prior to implant surgery. Make sure you discuss with your doctor the reasons for the vaccines, and when they recommend getting them.

8. Many surgeons require a physical prior to your surgery by your general practitioner. Some require that it be within 30 days of the surgery date. This physical may include additional tests like the EKG, CBC, BMT, PT/PTT, and chest x-ray. Discuss this with your surgeon at pre-operative visits.

9. Most surgeons ask that you stop taking aspirin, or aspirin-containing products during the 14 days prior to your surgery. Failure to do so, may cause your surgery to be cancelled. Some of these products are listed below, however this list is not exhaustive. If in doubt, please contact your physician and/or surgeon. These products may include:
Alka-Seltzer
Anacin
Arthritis pain formula
Arthritis strength BC powder
Arthritis strength Bufferin
ASA enseals
ASA suppositories
Ascriptin
Ascriptin ND Caplets
Aspergum
Aspermin
Aspertab
Axotal
Azdone
Bayer
BC Powder
Buffaprin
Buaffasal
Bufferin
Buffets
Buffex
Buffinol
Butalbital compound
CAMA arthritis pain relief
Children’s chew. Aspirin
Cope
Damason-P
Dasin
Darvon Compound
Epromate
Equagesic Tablets
Equazine M
ES Bufferin
Gensan
Genuine Bayer Aspirin
Goody’s Headache Powder
Isollyl Improved
Lortab ASA tablets
Magnaprin
Marnol
Micrainin
Midol
Measurin
Monentum
Norgesic
Norwich Aspirin
Pacanalgesic tablets
Pain reliever tablets
Percodan
Presalin
Persistin
Salatim Capsules
Saleto
Salocol
Sine-Off sinus
Soma Compound
St. Joseph’s Aspirin
Stanback Powder/Max Powder
Supac
Synalgos-DC Capsules
Talwin Compound
Therapy Bayer aspirin
Tri-pain caplets
Trigesic
Ursinus inlay tabs
Valesin
Vanquish
Verin
Wesprin Buffered
Zorprin
(Certain herbs and supplements should also be checked with you doctor. Go to
Herbal supplements: How they can interfere with surgery - MayoClinic.com for more information)

10. Just in case you are dizzy after surgery, and you live in a home with stairs, make sure everything you need is on one level. That way you won’t have to go up and down stairs for a few days.

11. If you are the person in your household who pays the bills, make sure you do this in advance. You can have them prepared, but ask a trusted friend to mail them on a particular date, or you can mail them early. (Like the companies will complain for getting paid early?) You may not feel up to bookkeeping for several days, so be prepared.

12. Some CI patients were told they could not lift more than 10 pounds for 3 weeks after surgery. If you are the grocery store shopper in your home, you may want to stock up on groceries as you will be unable to lift grocery bags full of food.


13. You cannot wear contacts in surgery. You cannot wear glasses during surgery. However, post-op, you will need to see to speech read, or to read notes written to you. Remove the “same side” arm on your glasses as the side you are having implanted. Keep the tiny screw and side-arm in a ziplock bag in a SAFE place so that you can re-assemble them later.

14. Go the library or video store so that you will have plenty of things you can do while “resting” with your feet up.

15. If you take other prescription medicines for blood pressure, diabetes, etc., make sure you have a week to 10 days worth before having to have it re-filled. The last thing you want to do the day after surgery is try to get a prescription re-filled.

16. Check with your surgeon about acrylic nails, false nails, or polish. Some do not require that you remove it, however some ask that you do. It is best to find out ahead of time, especially if you wish a professional to remove your nails. Ask about both fingernails AND toe nails.

17. If you have questions that need answers, bring them with you at check-in so that you will have the answers prior to being released.

18. If you have short and/or very thin hair (OR if you fear a horrific hair cut!) you may want to invest in some hats and scarves. Nice wide-rimmed hats with brightly colored scarves look great. The “guys” may want to do without the scarves – but baseball hats, cowboy hats, etc., are all great options.

19. You can find numerous CI lists online, some of which have pictures of post-op haircuts. If you see one you like, and would like the implant center to try to duplicate that “look”, print the picture off and take it with you! It won’t hurt to ask them to do their best to leave you enough to work with later!

20. If you color your hair, make sure you have this done a few days prior to surgery and washed a few times before the day of surgery. It might be a few weeks before hair can be colored again due to the incision.

21. Purchase throat lozenges with 6% benzocaine. Some people have a sore throat after surgery, others do not. The sore throat is from tubing used during surgery. Most people prefer cold pops, etc for sore throat, I found more relief with sipping hot tea ad broth. This will vary with each person.

22. Constipation is sometimes a problem with anesthesia. Ask your surgeon what he/she recommends if this becomes a problem and have that medication on hand prior to surgery so that you have it available is needed or ask your surgeon for a prescription when writing your pain meds and antibiotics for just in case.




Day of the Surgery

1. Whether you are wearing street clothes or pajamas home, make sure the shirt buttons all the Way down the front. You will not want to try to pull something over your head. The same goes for your jacket or coat if it is cold. No pullovers! Sweat pants, or “other” slip on pants are a great idea as well. Skirts, dresses, hose? No way!

2. Plan to wear slip on shoes. You do not want to have to bend over and tighten, then tie or snap shoes. No high heels. No-skid soles are best for OBVIOUS reasons.

3. If it is cold, bring a light scarf that you can lightly drape over your head to protect it from the wind and cold.

4. Bring a small pad of paper and pen to communicate with others.

5. Bring your “CI ready” eye glasses (see pre-op above) and a ziplock bag or container to keep hearing aids in while in surgery. If you do not have someone to hold these for you and bring them directly to you post-op, ask a nurse to take charge of them so that you can put your hearing aid back into the non-implanted ear after surgery. Label the baggie with your glasses and hearing aids with marker, even if you are leaving them in another person’s care. You never know! They may get misplaced.

6. If you know you will be spending the night in the hospital, make several nice signs that say “Deaf patient – Please face to communicate”, or other instructions. This can be taped to your door, above your bed, etc.

7. Do not wear jewelry – best to leave it at home.


8. Bring a picture ID with you. Once checked in, you can give it to a family member or friend for safekeeping.

9. Bring crackers or other light snack with you. You may be in recovery for hours and they will forget to feed you more than likely. Ask permission to eat peanut butter crackers, or ask for Jell-o or soup. (Make sure family or friends bring a snack or money to purchase something from the cafeteria.)

10. Arrive ON TIME as registration takes a great deal of time, and mountains of paperwork. Bring your insurance information even though they should already have this. Don’t take any chances.

11. Do not bring your purse, wallet, etc., unless you are leaving them in the care of a waiting family member or friend.

12. Talk to your doctor and anesthesiologist about anti-nausea meds. This can be given through your IV during surgery and helps many patients in your immediate recovery. If you are extremely nervous beforehand, you can be given a light sedative like Xanax or “other” through your IV. Talk to your doctor.

13. Want a Kodak memory? Make sure you bring a camera and instruct those around you to “snap happy”. YOU will not feel like taking pictures, but you can have designated people to take pictures, or even run a video camera.

Post-operative

1. Do not allow doctors or nurses to give you verbal instructions. Ask them to write EVERYTHING down. Even if you have a family member or friend listening as well, something may be forgotten.

2. Make sure there are clear instructions about incision care. Make sure it is written down.

3. Make sure there are clear instructions written about HOW and WHEN to wash your hair. You may want to find this information out ahead of time in case you need to purchase special shampoos, etc.

4. After surgery, if you have to sneeze, do so with your mouth open! Closing your mouth, or trying to hold the sneeze back may damage your ears and break the clot from the surgery.

5. Avoid crowds and little ones if possible. You do not want to catch a cold, virus, etc. Your immune system will be weakened from the operation.

6. Do not drive for at least a week, however some surgeons ask that you do not for as long as two weeks. Obviously, if you are dizzy and weak after 2 weeks, you still should not drive. “When” you can drive varies a great deal based on the responses I received. Ask the doctor. Many who responded said they were told no driving as long as they were still taking prescription pain meds.


7. Make sure you have a reliable way to contact your surgeon and implant center (with the actual names of a couple of nurses), and your general practitioner.

8. Returning to work varies individual to individual. Speak to your doctor about this, and stay in contact with your employer so that they know how you are doing and your anticipated return date.

9. This may vary hospital to hospital, but no airline flying for at least 3 weeks after surgery.

10. Ask for an identification card the implant center may have available that you can carry with you in the future, to verify that you have a cochlear implant and that it cannot be removed. Security checkpoints in certain buildings, all airports and train stations, etc., will need to see proof of your medical implant.

11. Some patients experience a thighness from ear to base of the neck. A gentle message a few times a day helps relieve discomfort.

12. Some swelling and a possible bruise under the ear along with a slight black eye is not uncommon and most all of us experience one or more of these reactions. Not to worrry, it goes away in a few days and the vise that holds our head in position during surgery contributes to some of these reactions post op.

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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