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Jawbone Replacement due to disintegration of radiated jawbone

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

I have done tons of research on the best doctor and the best medical facility to have this procedure done.

I have very strong opinions about this but hoping not to offend anyone would be willing to share them if there is interest. I was initially diagnosed with Stage 4 oral cancer of the tongue in 2002, I have had 5 surgeries since then at the best hospitals and with the best surgeons in chicago.

Being doubly radiated (ugh!) my jawbone started to deteriorate in 2011 to the point that I was in indescribable pain for the entire year. I had several "holes' in my chin that drained fluid constantly. I was a sight!

I am at this moment 8 weeks post surgery for a complete jawbone replacement and neck skin replacement! I was fortunate to have Dr. YU (Reconstructive Surgeon) at MD Anderson with Dr. Meyer (Otolaryngologist and surgeon) as team member! I had put off the surgery for an entire year because of fear! Fear of losing my speech and my ability to swallow liquids to some degree. Fear of the pain and surgery itself. Fear of yet another medical failure! Nevertheless it ws the ast stop !

I sit here a complete success having no pain for the first time in years. I don't want to take up a lot of space on this blog with such a specific topic but if anyone would like to contact me directly please feel free to do so: marianne2428@yahoo.com
Sweetgammy

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

I am happy to hear it worked out so well for you.

Pat

phrannie51's picture
phrannie51
Posts: 3744
Joined: Mar 2012

Congrats on the great surgery...I know there'll be somebody wanting to contact you...and find out who, what, and where!!

p

CivilMatt's picture
CivilMatt
Posts: 2982
Joined: May 2012

sweetgammy,

Well that’s knocking the ball out of the park. It is so nice to hear of a difficult success story.

Keep healing,

Matt

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

At first I was shocked at what you endured, then you say it was a total success and you are pain free! Such great news Sweetgammy and you so deserve it.

Wishing you the best,

Tom

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

How nice of you to offer this information. I would like to make you a friend for future advice if you wouldn't mind. My husband is suffering from osteoradionecrosis and at this point the doctors are just watching it closely. He is in varying degrees of pain but, it is manageable thus far.
Unfortunately, he is in treatment for a distant metastasis so we really have to focus on that battle for now.
So happy for your successful surgery and wish you all the best from here out!!!

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hi Robin!

First of all...how is your husband doing?

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hello everyone!
I've not logged on for awhile as I have been so busy with follow up appointments after jawbone replacement surgery in April. I have been seeing a speech therapist several times a week and a swallow expert several times a week plus twice a week I have a massage of the surgical area to reduce scar tissue and increase blood flow. I'm so thankful that my recovery is going so well but I'm exhausted going from one appointment to the other.....I am not complaining!!I also am slowly going off all of my pain meds. prior to the surgery I was taking a lot! A patch, Norco, oxycodone and drinking morphone! Wow! I was in so much pain caused by the disintergration of the jawbone plus all the infections one after another! I had to have someone drive me to the hospital every day for antibiotic infusions etc. etc. etc. You all know what its like! Well coming off the pain meds was NOT easy. It's been hard but I am now only taking a few Norcos now and then. I have found that my low blood pressure (fainting spells) has gone away as I reduced the pain meds. According to my doctors the pain meds can lower blood pressure. It was getting to the point that I was afraid to stand up after sitting for awhile or lying down. All gone now! there are so many reasons when one is so ill to be depressed but I hadn't thought how much the pain meds, although controlling the pain, were also contributing to depression. I still take a mild doses of Lexipro.

So all is going well and I am headed back to Houston for the "debulking" procedure in the middle of September. This is supposed to be an easy procedure lasting only about 2-3 hours and I will be done with that 'goiter" look under my chin! i would like to know how everyone else on this "jawbone reconstruction" discussion board is doing! Look forward to hearing from everyone! Again, if you're uncomfortable commenting or would like to contact me personally my e-mail is marianne2428@yahoo.com I look forward to catching up with you and this topic!

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Based upon my last dentist visit, I have yet another loose tooth due to bone loss. This was from the 46 radiation treatments that they zapped me with. I've been doing research on this and reading your story leaves me some hope that I too can get through this phase of my life. I don't know when or if I will really need it, but it is good to read that this procedure isn't the end of the world, or life.

I will talk to my surgeon when I see him in February his feelings on the bone loss and what kind of time frame I might be looking at for this procedure.

Sam44646
Posts: 9
Joined: Feb 2013

Hi Gammy.  I just found out that the HBO and/or debridement treatments were not successful.  I now have a fracture to my left lower jaw that needs dealing with.  I was diagnoised almost two years ago with tongue/tonsil cancer.  I did two weeks of chemo and 37 radation treatments.  Thought I was getting pretty much back to normal (post cancer normal) before I got this latest news.  Needlees to say I'm a little unraveled with the whole idea of a major surjery and the recouperation that goes along with it.  Looking to hear from those of you who have already gone through this so I can be as prepared as possible.

katenorwood
Posts: 1832
Joined: May 2012

Hello !
Have heard some very great positives about MD Anderson as a whole. I have other friends who are doctoring with them. I am so happy that all went so swell for you ! Continued success with healing. Warmest regards, Katie

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

Congratulations on coming through such a complicated and risky (in terms of success rate) procedure with no pain. I'm in a wait-and-see period with my ORN. I had a debridement 6 weeks ago and the docs are thinking that I can avoid a jaw resecting procedure.

I can relate to the fear you had about the jaw surgery--especially from some of the stories we've seen here. Before my debridement I was terrified that I could be heading down that same road--and just the thought of it was unbearable. I have another follow up appointment next week and I have my fingers crossed that the doc thinks I'm still making good progress from the debridement.

Way to go!

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

how are you feeling? My guess is that once you show that you have started healing, you will continue to heal. But thats just speculation on my part.

Pat

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Gammy, I am truly happy that your surgery went alot better than mine. I still can't swallow, I have a disfigured face and I can't talk. While the lymphedema has gone down quite a bit, it is still pretty prevalent. One of these days I'll get up enough nerve to post a picture although, if I do, it might stop alot of people from considering the surgery.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

My cancer was actually in my lower jaw. January 2012 the mandible was removed and replaced with titanium and the fibula from my leg. A 19 hour surgery, 4 days in coma and then 2 weeks in hospital followed by rads and chemo. Finished tx mid-May and have had 1 CT scan with contrast that was clean. Most of lower teeth were removed during surgery. Scheduled to start implants in November but not til I do 30 days in hyperbariac pressure chamber 2 hours a day. I am currently doing neck massage therapy for lymphedema and find it delightfully relaxing and it seems to help. I have good enough range of motion in my neck. The feeling that I had a bag of nickels on my chin is getting better. Swallowing hasn't been an issue and I am able to talk about as well as anyone without all of their teeth. When I wake of a morning my neck is very hard so hopefully when they get the scar tissue broken down that will ease.
George, where did you have your surgery?

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

My surgery was done at Greater Baltimore Medical Center. My two main surgeons are associate professors at Johns Hopkins. The head and neck cancer center at GBMC is somehow connected with Johns Hopkins even though GBMC, to my knowledge, is not. Had a swallow study done again yesterday. It looks like the dilations aren't going to do any good. The bone in my throat is not moving forward to start the swallowing mechanism. This is either due to the severe fibrotic condition of my throat or the lymphedema that still remains in my lower face. My swallow therapist is going to check into the study I had done before my surgery last year to see if the bone was moving then. I'm praying that it's not moving because of lymphedema. At least that might go away. There is nothing I can do about the fibrosis. If it's due to the fibrosis, my only option is to have a laryngectomy and that's kind of risky due to the condition of my neck. Decisions, decisions.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Sorry you have had such a difficult time. This whole ordeal is a nightmare by itself without adding complications. My heart goes out to you and I will pray that your swallowing kicks in again. Have you had any neck massage therapy for the lymphedema? It has to be prescribed but then your insurance should pay for it. I just started it but it seems to help the lymphedema. God Bless!

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Sorry you have had such a difficult time. This whole ordeal is a nightmare by itself without adding complications. My heart goes out to you and I will pray that your swallowing kicks in again. Have you had any neck massage therapy for the lymphedema? It has to be prescribed but then your insurance should pay for it. I just started it but it seems to help the lymphedema. God Bless!

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I started with lymphedema massage treatments around November of last year. It reduced the swelling quite a bit but not all the way. I stopped going, I think it was around May, because it didn't seem to be helping anymore.

luvofmylif
Posts: 344
Joined: Sep 2012

My heart goes out to you for all that you go thru. I am hoping and praying things get better for you.

Joan

Debi16043's picture
Debi16043
Posts: 48
Joined: Aug 2011

Well how are you doing now?

Tiger88
Posts: 1
Joined: Nov 2012

My sister in law has just been diagnosed with stage 4 cancer in her lower jaw but what is complicating this is that she is also mentally retarded - about 12 year old though she is 60 years old and she has severe sight problems (+1200 degrees) and hearing deficiency and slightly slurred speech

She will require removal of her lower jaw and reconstruction with thigh bone and then eventually dentures - similar to what you have experienced

there are 2 camps in the family

Camp One - against surgery due 'why make her suffer' and 'what for?' and let her die in 6 months to one year and avoid all the post operative care

Camp Two - go for surgery and extend her life even though long term removal of cancer is only suggested at 50/50

Reason why I am writing is for your personal input into how difficult the recovery process is and whether it is worth it considering the extra circumstances of her being mentally handicapped?

I would add that she is not unhappy and lives a simple life with her pet birds, her daily routine and her love of going out to eat (something that she will not be able to do for what I think will be 6 months)

Another consideration is my son and my daughter's weddings which will happen over the next 2 years and it would be nice for them to have her around for that

Your frank comments?

thanks

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

Yours is a tough situation, one where there are no simple answers. It is a very difficult surgery under the best of circumstances, and it is very likely you are talking about radiation afterwards. Radiation is potentially harder than the surgery itself. The surgery proposed takes 10-14 hours as a rule. It involves a temporary tracheostomy and placement of a feeding tube, in addition to removal of the cancer including jawbone, and placement of a bone graft from the lower leg to rebuild the structures lost. Best case, this results in 8-10 days in the hospital, followed by convalescence at home that will require assistance for 1-2 months. I say 1-2 months if no radiation is done. If there is postoperative radiation, it will be five days a week for a total of about 6-7 weeks. The radiation is generally followed by a few months of gradually decreasing disability. That disability is generally inability to eat requiring assistance with feeding through a tube, as well as fairly profound weakness requiring a significant effort at rehabilitation.

If all goes well, life will gradually return to fairly normal over the first year post treatment, but it will likely take every bit that long to get there. Everyone will have an opinion on this, but it will be opinion only, not anything carved in stone. I wish you the wisdom to chose wisely, and the courage to follow through. This is a difficult path under the best of circumstances.

Pat

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

While I did not have cancer in the jawbone, the radiation from my base of tongue cancer affected the bone so that 7 years later, I went through jaw replacement. My bone graft did not work so now, I am left with a partial jaw. I can't imagine someone going through what I went through and not understanding what is happening to them. How well do her doctors know her? Do they feel she would understand enough to proceed? I really hate to say this but if I had it all to do over again, I would not have the replacement. There are others on this board whose operations went fine. If she didn't have the operation, can they make her comfortable? I'm just rambling at this point because I don't know what to say except you and your family have my prayers.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Not certain where the 50/50 is coming from. My doctor told me my cancer in jaw was treatable and curable. Female age 61. The option of no tx was to wait around until I went to hospice. Of course, I opted for surgery 01/2012. Surgery was 19 hours long followed by 4 days in an induced coma and 8 days in intensive care, a couple of days in a regular room and home. No food no water by mouth. No pain. Had a trach, very difficult for me, but did not go home with me. Healing of leg wound took most effort. It had to be cleaned and bandaged daily for weeks, required walker then cane until healed. I have very little recall of the hospital but did have horrific halucinations while there. I read that Mayo in Rochester is doing procedure without using fibula which would have cut my recovery time significantly. If that were all to the story, it was not bad at all. However, I had lymph node involvement which required rads & chemo. That was much harder on me than the surgery but I got thru it. Given the same choice , would I do it all again, YES. My scans have shown NO EVIDENCE OF DISEASE. Granted, yours is a special situation. If you opt for surgery, I pray rads/chemo are not needed.

traceyd1
Posts: 29
Joined: Nov 2012

My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little did we know that sarcomas don't discriminate! He began radiation 1/12 and had 20 treatments. Lymph nodes were clear, so he didn't need chemo. He had a segmental mandibulectomy and partial neck dissection 2/27/12. Surgery was supposed to take 12 hours, but ended up taking 18. There were problems with the blood flow to the fibular free flap due to damage from radiation. After 48 hours we had to go back to surgery for 8 hours due to loss of blood flow. Doctors were unable to re-attach blood flow, so they removed entire flap and started over four days later. They then used the other fibula and reattached veins/arteries to the other side of the neck, and we had no more complications. He had a trach for 18 days, was in ICU for 15 days, and had the trach removed the day we came home. His primary pain was in his neck, as he had neck fusion surgery several years ago. He had a feeding tube for about three months and lost about 50 pounds. His wound care was pretty intense, as both his fibulas were removed, and one of his skin grafts didn't heal properly. He had extensive physical therapy and OT for lymphodema. I am a speech therapist, so i was able to help him with some of his speech issues, but he also had a phenomenal speech therapist that works primarily with his surgeon. He really didn't have many problems. Was able to progress to a soft diet pretty easily. Definitely not a walk in the park. The first week home from the hospital was very rough. He had the sensation that he was choking, but this was because his mouth was so dry and he had dried clots of blood in the back of his throat that we had to wait to work out and suction up. He is to have de-bulking surgery in two weeks and they will also take a bit of hip to place in a gap in his jaw that didn't properly fuse. He has been back to work full time since May and will actually take our youngest on a Dad-son trip to Orlando this weekend. He will begin the process of implants in about six months. Although I would not wish this journey on my worst enemy, I feel that now that we have made it through this, we can make it through anything. Good Luck to you all.

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

welcome to the group, and thanks for the story. You guys have really been through it. Glad things are finally looking up.

Pat

vetorama's picture
vetorama
Posts: 16
Joined: Sep 2005

Where was the surgery done? I live in Florida, have stage 4 of mandible and floor of mouth. Wondering about anyones experiences at Moffitt or MD Anderson Orlando.
Thanks

longtermsurvivor's picture
longtermsurvivor
Posts: 1806
Joined: Mar 2010

Why don't you start a new thread and raise the topic? When you get a post like this buried way down a thread it doesn't get as much attention as it should. If you'll start anew you should get a number of answers.

I had floor of mouth cancer in 2010. Had a radical resection and reconstruction, which went fine. So I can tell you quite a bit about the surgery itself. Mine was done in St Louis, MO. It wasn't fun, but I got through it pretty well.

Pat

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

I also had mine done in St Louis MO.

traceyd1
Posts: 29
Joined: Nov 2012

We live in Baton Rouge and my husband was treated at Mary Bird Perkins Cancer Center. We had outstanding care.

sabriene
Posts: 27
Joined: Aug 2006

Just saw your note and I may need a good surgeon myself.  Would you mind giving me there name and etc.  I live in Branson, Mo.  Had stage 4 of the mouth and did pretty well with it all but had a bad set back last July and now back on a peg tube.  Seems like we all tend to get many of the same set backs in time.

Glad to hear your doing pretty well.  Roger

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I'm meeting a friend who just completed jaw replacement and he too is very happy and back playing golf.

Amazing what they can and are doing.

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hello Everyone!

I thought I would post an update of my condition being 8 months post surgery for a jawbone replacement. I am doing great! Everything is going well considering what I have been through for the last 10 years. My jawbone replacement was done the end of april this year (2012) at MD Anderson in Houston and in august I went back for liposuction of my neck. I look pretty good! It's as if I have a double chin and it is little different color than my face since my chin is now my thigh! ha! but I have great makeup which makes it blend in quite well. I'm not in any pain and have been going through a lot of theraphy for speech and swallow! I still have my feeding tube but am taking more and more "blender liquids" with a syringe. I can't move solid food with my tongue being tethered down on both sides ( my tongue is my arm...another ha!) but I can still have a little taste of things doing the syringe thing. I CAN however drink a cup of coffee or tea or whatever using the swallow techniques I've learned in theraphy. The speech and swallow theraphy have been such a blessing. there are some letters of the alphabet that I will never be able to say but if i speak very slowly most everyone can understand me. Women do a better job of understanding than men however! My therapist and I practiced the most important thing.....beinig able to order a starabucks through the drive through! ha! Working with a good therapist is a must for all of us! I also had a lot of Lymphatic Massage theraphy and that really helped with the blood flow in the area! I would highly recommend that.

I still am very high on all the supplements that I take and Dr. Keith Block's Cancer Diet of no meat, no sugar, no dairy! Now I', also taking a mushroom blend as well!

I still have a problem with too much saliva but I've found that carrying a stylish hankie works pretty good! Again.........I would encourage anyone to seek out the very best medical care for oral cancer even if the "travel" is out of your comfort zone! I've made a lot of mistakes in the last 10 years trusting the wrong doctors. Thank God! I found the right one and the right place to be for all my medical treatments from now on!It takes me less time to fly to Houston from Chicago than it took me to drive from the suburbs to downtown Chicago!  Good luck to all of you! and God bless and keep you!

Sweetgammy!

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I truly am happy for you and a tad jealous at the same time.  I would give my left _______(fill in the blank) to be able to drink one of my Mexican coffees.  I can smell the coffee and Kahlua.  I can see the whipped cream slowly melting on top and making a swirl.  ACK!  Gotta stop these daydreams.  Keep up the good work Gammy.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

As someone that drank nearly a pot of coffee a day, for some reason, I usually choose water when gven the choice today. George, if it's any consulation, it's just not the same as it used to be. Continued success to you, Gammy. I conquered my speech with most of my lower teeth missing and am now feeling back to square one with temporary denture. Seeming like this process is never-ending so it is always good to hear of someone doing well. 

Sam44646
Posts: 9
Joined: Feb 2013

Hi.  I need some words of encouragement.  I'm 54yo male diagnoised with state IV tongue/tonsil cancer back in 02/11.  I had two weeks of chemo and 37 radiation treatments.  Problem I'm have now is with dead bone in my left lower jaw.  Had a debridement done but that led to a fracture of my jaw do to weakness in the bone.  They have schedule me for surgery.  Fabila Free Flap replacement.  The whole idea of this surgery has us all scared half to death.  I need to know things will get better. 

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

they will get better.  There is always the chance they won't.  I think I am the only unlucky one in this forum that they didn't go right for.  I think my main problem was that they couldn't get a good, new blood supply going to the bone graft.

traceyd1
Posts: 29
Joined: Nov 2012

Hi,

My husband had fibula free flap in Baton Rouge.  He had some issues with blood flow initially due to damage from radiation, but is doing wonderfully now. 

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

Hi

I to had total replacement 5 years now mine was done at the Houston VA I could see MDAnderson out my window. Doing great now but it was no easy road my big sugery 21 hours and a few 4 hour 

johncoon4
Posts: 1
Joined: Mar 2013

I still have feeding tube and have lost at least 40 lbs. Still not allowed to eat soft foods.Have had an infection in my throat and can't get a very good answer about what might be going on. Live in Louisiana and get burn out driving back and forth to Houston.

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

I do not know how far you are from Houston but I fly in & out same day as Dr appointment  but I think Baton Rogue is as close to the east of Houston that they fly. I only drive when I want to and have a hotel room.

As to the FT I know how frustrating it can be and the one thing you don't want to hear it takes time. All infections take time some more than others. I have been going to MdeB for 6 years now and have had many surgeries. Wish I could be more help but from what you have shared best I can do

Bill

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

My cancer was in jaw so I also had my jaw replaced with fibula in 19 hour surgery. That was 01/2012. Finished rads & Cisplatin 05/12. The radiation got me more than anything. I have lost 65 pounds, weight loss has slowed dramatically the last few months. My feeding tube was removed last June. Think of it as your friend. Nutrition and hydration are key to your success. I was fortunate that I did not need to travel. I have had 3 clean scans since tx finished. Don't lose sight of the goal. God Bless!

traceyd1
Posts: 29
Joined: Nov 2012

I agree.  It is a slow process, but slow and steady wins the race.  My husband was discharged exactly a year ago, and other than missing teeth, he is doing great.  Hope to get that taken care of in the fall some time if insurance will pay for it.

retiredosc's picture
retiredosc
Posts: 3
Joined: Jun 2013

Does anyone know of specialist near the eastcoast that will work on retired military? My only insurance I have is through the Veterans hospitals (VA) and my surgeon in Philly won't do my jaw replacement now.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

First, thanks for your service. I live in the Midwest so no help. You might want to start a new thread/discussion topic for more replies. Good luck

retiredosc's picture
retiredosc
Posts: 3
Joined: Jun 2013

Thanks, My case manager called me today and is looking into somewhere here in PA.

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

The actual surgery is so important that I would travel wherever I needed but you'd also have long distance follow-up to deal with. Any chemo/rads (if needed), I say the closer to home the better. 

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

(jeez, I can't believe I'm communicating with a Steelers fan, LOL)  I'm not quite sure I understand your situation.  Is your doctor refusing because the VA Hospital says no or is it that he does not have operating privileges in the VA Hospital.  I don't know about the size of the VA Hospital in Philly but the one here in downtown Baltimore is very large.  Is the reason that the hospital there can't handle that type operation?

jwilli
Posts: 9
Joined: Apr 2014

hi Maryanne,

I found out yesterday that I need to have my lower right jaw replaced with the tibia from my leg. needless to say, I,m very worried and upset. I too had radiation after having 2/3 of my tongue removd. were you able to walk and if not, how LNG before the pain in your leg went say....any jaw complications?

is this surgery disfiguring? Any help and suggestions would be greatly appreciated.   

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

I had a left mandibular resection in May 1, so am now at home for the long recovery.  As I was told it would be, in the short run the leg pain and stiffness is the biggest problem.  I wait several months until they can start the dental work.  Let's stay in touch, and PM me if you want to.

 

Mike

 

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