ANA Discussion Forum
General Category => AN Issues => Topic started by: cmp on June 26, 2008, 09:28:17 am
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SORRY I FORGOT TO LOGIN AND MAKE THIS THREAD FOR YOU GUYS.
HERE ARE THE EMAILS IVE SENT OUT
Jordan (CMP's) Hubby
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6/23 10:PM
As you must know by now, Carrie is entering Mass General Hospital in a little over 8 hours
for Neurosurgery, to remove the acoustic Neuroma which has regrown since it
was removed 20 years ago. She is quite calm and ready, but we may be out of touch for a few days.
I made this temporary mailing-list heal@cur.io so I can post updates in real time from my phone, to people who may be thinking of Carrie, or praying for her.
If you reply, please write directly to me, cause you might spam the whole list by accident!
Jordan
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6/24 2pm
After prep, Carrie went into the OR around 8:45. I got a call from chief of neurosurgery at 1:30 that she was out, stable, tumor-free, and that I can see her after 3:30.
My iphone is almost dead though!
Thanks for everyones (religious) prayers and/or (athiestic) positive thoughts. They seemed to have worked, but this is not scientifically testable:)
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6/25 7am
Carrie's surgery ended at 1:30, and at 4PM they let me visit her in the ICU.
She had no major complications, just some post anasthesia pain and nausea.
The Resident came in and did some basic neurological and motor tests, which she passed beautifully,
and he commented that the surgery went perfectly, and the tumor came out in one piece, relieved pressure
on the trigeminal nerve (which caused the facial pain) and didn't implicate any other nerves.
She slept and drowsed for another 4 hours while I sat next to the bed, and then we spoke for
a while after 8PM. Its all good!
She will be transferred to a hospital room this morning, and after my 5 hour roundtrip drive to camp with Dylan,
I will find out the room and update you all again.
Thanks again for all your caring and concern!
Jordan
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6/26 10 AM
Yesterday, I visited Carrie at 3pm and 8pm and she was still in pain and uncomfortable, sipping water and ginger ale. Today I got here at 10am and she was gone, walking around the halls with her physical therapist!
She'd even eaten banana and Cheerios!
Her room is Ellison 1234a
Her phone is 617-724-5290
Don't know if she will answer or talk to amyone but I will try to get her to use webmail later.
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This is absolutely wonderful news!! I am thrilled to hear that Carrie is doing so well - please tell her I am sending hugs and lots of good wishes. And, I'm impressed that she is already eating cheerios!!
Debbi - doing the happy dance in NJ
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Wow its great to hear how Carrie is doing it brings inspiration to those of us waiting or surgery.
I will be thinkiong good thoughts to an easy recovery. I will be looking forward to reading future posts.
Thanks Sam
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Hi, Jordan:
Thanks so much for the exciting update on Carrie. Her apparently trouble-free surgery and what seems to be a remarkably rapid recovery is as heartening as it is amazing. I'm sure your support has been a big help to Carrie and we know that she'll be back here soon as a 'double postie' (twice having AN surgery). Give her our collective good wishes and a big hug. :)
Jim
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Jordan -
sounds like Carrie is doing wonderfully! Thanks for updating us; we worry about our AN family members.
Please give Carrie our best :)
Jan
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Great news! Thnaks for updating. Hopefully she will have a speedy and uneventful recovery.
Eve
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Thank you, Jordon for keeping us posted on Carrie (the double postie). That's great news that she had a successful surgery. I am sorry to hear that she had a rough time with pain. Hopefully that will go away soon. Meanwhile, please say hi and give her our best.
David
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My very best wishes for a strong and sure recovery!
Tammy
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Jordan,
Thanks for the update. Carrie has been very much on my mind and i'm glad to hear she is doing so well! Please give her our best. I wish her a smooth and speedy recovery.
Wendy
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Jordan,
Thanks for the update. I'm glad that the surgery went well. It's a good sign if she's eating and walking 2 days post-op. Carrie is sure to have a speedy recovery. Prayers and good vibes and well wishes are being sent her way.
Syl
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Thanks for the update on Carrie, Jordan. It's positive news that she's up and walking the halls as well as eating a little bit.
Brian
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Oh good. That's what we like to hear. Bananas and Cheerios is a very good sign.
Best wishes, lots of rest, then back to the forum when she is up for it.
Steve
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Jordan~
I have been out of town and I was wondering how Carrie was doing - you've all been in my prayers. Hope the trip to camp went OK and that your son is doing well. We were picking ours up from 2 weeks at camp - 1st time (she loved it!)!
Give Carrie a hug!
K
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Very, very good news Carrie! Hang in there and may your days from here on out become pain free! WEEEEEE!
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HI Jordan and Carrie...
Just back on online and glad to hear that all went well. Keep the good work and news.
Trish
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Jordan,
That is great news! I'm so glad to hear she's doing well and on her feet already! I hope she's back home soon and on the mend!
Thanks for keeping us updated! Hope your son is loving camp!
Lori
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Jordan -
any more news on Carrie's progress?
Also, how is your son handling being away while Carrie is in the hospital? Is everything turning out okay for him?
Just wondering,
Jan
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Hi everyone, and thanks a MILLION for your good wishes, which have brought me countless (half-asleep) smiles... I am so surprised to be home this quickly, and of course thrilled to have no new neurological glitches to add to my collection. My husband has been amazing (but you already figured that one out!), and both my kids seem to be taking everything in stride. (We called my son at camp last night and it was just like a regular conversation with him (ie "I left my razor and orthodontic bands, could you send them?), so that's a huge relief. My local rabbi (it's a Jewish camp) checked in on him for us, too, and confirmed that he's settling into his bunk just fine.
the biggest issue for me was going from the endlessly adjustable hospital bed to a flat bed--apparently they had to cut through the neck muscle, and extend the incision more than last time, so my neck is pretty significantly ouchy and I just didn't see how I was going to get through the night without being able to sleep on an incline. My fix-it hubby came to the rescue, of course, and suggested I sleep in one of our new cushy Lazy Boys--worked like a charm. I was able to even tilt my head towards the incision side without actually putting weight on it.
Well, that's all I'm capable of now (you have no idea how many typos it took me to get this far ;) ). Just wanted to say again that your support has really touched my heart and made me feel so much stronger! I will post again as soon as I'm able...
The Cheerios Kid
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Carrie~
GREAT to hear from you! I am glad that you are home and settled in the Lazy Boy - they sure are comfty!
Continue those great strides!
K
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Agreed, it's GREAT that your home and on the mend! As you know, it only gets better from here!
Brian
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Hi, Carrie;
Congratulations and welcome to double-postie land. :)
So pleased to learn what a successful surgery you had and that you're home so quickly...always a good sign. I love my recliner so I can appreciate your comments on that. Its unfortunate about your neck sensitivity but your husband seems to have saved the day and I'm glad that he did. That your son is doing well at camp is a relief, I know. One less thing to worry about as you try to recuperate.
Don't be concerned about posting. We're just glad you're doing so well and could post at all. That our support has strengthened you is very rewarding, Carrie. Your experiences have undoubtedly helped others, too, I'm sure and you're an inspiration to many. Thanks for being part of our 'family'. :) Now, get some rest. We'll be here when you're better able to post messages.
Jim
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Carrie,
So glad to hear you did so well. Fantastic news. Take care.
Robyn
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Carrie -
I was so surprised to see you posting already! What a trooper!
How wonderful that you're home and all is well with the kids! Although I have to wonder how on earth you got your son to worry about not having his orthodontic bands?? My daughter would have gone without them forever if I didn't do mouth checks every morning! Of course, then she'd probably still be wearing braces! :D
Anyway, I'm glad everyone is doing well and your husband sounds like a real sweetheart! I hope you get some much needed rest in the recliner. What would we do without those things?
Take care!
Lori
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Carrie-
I was so thrilled to see your post when I logged on this morning! And, I am so very glad to hear that you are feeling okay - all things considered.
Ouch - the neck muscle sounds really painful! Have you considered one of those foam "wedges" that keep your head and upper body elevated? I think you can get them at places like Bed, Bath & Beyond. We got one for my mom after she had lung surgery and it seemed to help. Just a thought... Otherwise, the lounger sounds really great.
I am sending lots of good thoughts your way, Carrie. Find something to laugh about every day, and know that we are ALL here cheering you on!
Debbi
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Hi Carrie!
I was so happy and surprised to see your post when I logged on. Congratulations on your return home and on having no additional problems to deal with. Your husband was great about keeping us updated and of course, it's even better to hear from you. Glad to hear your kids are taking things in stride although not really surpriseing. Kids are very resilient. Your husband's idea of you sleeping on the couch for now was a really good one and I'm sure you'll be more comfortable there util you're feeling a little better. Best wishes,.
Wendy
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Steady and easy as she goes Carrie, glad you're in a place of loving comfort--home. There's no place like home!
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Carrie -
thrilled to see you are home - and much sooner than I expected ;D
Glad your son is doing well in camp.
Tell Jordan it was wonderful of him to keep us updated.
Jan
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Just checking in briefly (I'm semiconscious and the typos are taking over every word I type...)
I am feeling a bit stronger and much more optimistic--we saw some old friends last night, and a good friend dropped by this afternoon, so I'm finally spending more time making silly jokes than worrying!. The stiffness in my neck is much better and I'm not needing so much pain med for the headaches. Unfortunately I do seem to have some trigeminal neuralgia on the right--apparently the tumor was pressing on the TGM nerve, and though the AN was totally removed with no sticky pieces, I'm nonetheless getting a lot of nasty shooting pains in my jaw, temple, cheekbones and ear. Though Dr martuza hopes it will resolve by July 7 (when I go to get my sutures removed) he says I should bring the issue up at that time for further discussion.
I am taking my doc's advice to walk 4 times a day religiously. It's funny, though I was in pretty good shape at the time of surgery, after being prone a couple of days, my legs got REALLY charleyhorsed the first few times around the block!
Lori--re my son remembering his ortho elastics: He was at the ortho's office two days before we dropped him at camp, and he is DYING to get his braces off at this point. When I told him I wouldn't let the dr just pull them off because he was impatient with wearing them, I guess he caught onto the fact that the length of time he spends as a metal mouth is fully in his control... :)
I will try to catch up with more of the threads here tomorrow--but in the meanwhile, hope all those who have had treatment recently are comfortably recovering, and calm thoughts to those whose treatment is imminent!
Carrie
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Carrie,
I hope you feel as good as you sound! I'm sure you are tired, and know you are having pain from the trieminal nerve but seem like you are in good spirits. Here's hopinf the doc isright and it resolves soon.
Wendy
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Carrie -
thanks for checking in.
Get some rest :)
Jan
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I am continuing to get stronger every day, and (never thought I'd say this) am not needing the pain meds nearly as much. And I think I logged a full 2 miles between all my walks yesterday, which felt very very satisfying. (Unfortunately, today it is dismal--cold and rainy--so unless I stoop to mall walking, I'm kind of housebound).
The facial neuralgia still comes and goes--quite painful at times, hardly noticeable at others--so I'm hopeful it's just the trigeminal nerve having a hissy fit over being poked and prodded at, and will resolve with further healing. I go in on Monday to get my sutures out (I've been having lots of fun wearing all my colorful vintage scarves--I'm a vintage clothing/jewelry dealer in my "other" life--but boy am I looking forward to being able to shampoo again...)
The bad news is that my mom is back in the hospital, with a blood clot in her leg. My husband took her downtown for her 3 week oncology checkup yesterday (I tried to warn him that her checkups are NEVER routine--something always comes up, and the day invariably ends up being at least a 9 or 10 hour long one, but he still went off planning on being home in time for dinner at at 6... Guess that's what's known as finding something out the hard way...) They admitted her to Beth Israel Deaconness (where she has been receiving her care) and did a CAT scan of her head late last night just to confirm that the clot hadn't gotten anywhere dangerous.
She will need daily injections of bloodthinner indefinitely. They sounded me out to see if I'd step up to the plate (when she had a lung catheter put in in the fall which needed to be drained 3X/week, I was more than willing to be trained in the technique and continued to do it for her for almost 4 months). This time, the thought of going daily to her ALF, which is after all a potential source of infection till I'm really back on my feet, didn't seem so wise (not to mention the fact that I'm also not driving yet!), and I also feel so woozy/tired sometimes I wouldn't want to be responsible for showing up at a specific time to administer an injection in the right location (I'm not exaggerating when I say that, in addition to the nap attacks, I get major bouts of loopiness--keeps my 21 year old in stitches, but I wouldn't want to be on the receiving end of a hypodermic with a goofball such as I frequently morph into on the other side of it...)
So I think when the Visiting Nurse Association (they are affiliated with Hospice care) say they have exhausted the number of times they can come and do the injections as part of her Medicare coverage, I'm going to ask my mother to just bite the bullet and pay out of pocket for them to do it. (She is more than able to absorb the cost financially...)
that's the basic scoop. Only other thing worthy of note (if not exactly surprising!) is that, for the first time in years, I have NO plans to celebrate the 4th of July. I usually march in the local Sudbury Parade with the local town Democratic Committee (various state senators and congresspeople often walk with us, as well as any new candidates we are backing, so it's a lot of fun), but the route is really a bit too long. And even though I ADORE fireworks displays--there are some truly amazing ones around here--I think I'll leave the crowds and earsplitting acoustics (plus a good chance of lightning and/or pyrotechnic-dousing flash flood) to the haler and heartier red, white, and blue junkies out there.
(I AM dressed all in red white and blue, BTW--couldn't resist just a wee bit of kitsch!) I know my mom will get a kick out of that when we bring her home.
Anyway, my very best wishes to everyone for a super-Happy (and even Healthier!) Independence Day!
Carrie
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Hi Carrie-
And Happy Fourth of July. Glad you are a bit better and stronger each day. I am, however, very sorry to hear about your mom. It sounds like your decision to let the HHC take care of her daily injections was an excellent choice. I can't imagine trying to take that on when you are so recently out of surgery yourself. As you say, the fatigue alone would be a problem, never mind the loopiness.
I also think you made a wise choice to opt out of the fireworks. You can always tune in the NYC fireworks on TV and then you can turn down the volume and avert your eyes if it's too much! :D That's what I plan to do - can't even think about the full body experience of live fireworks right now. Maybe next year...
I'm so glad you are doing well, Carrie.
Debbi
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Carrie -
It was great that I logged in and saw your update. I'm sorry to hear about the other issues with your mom. Keep the faith and keep moving as much as can, but don't over do it. It's great that you're feeling stronger and stronger! Continued healing, my friend.
Brian
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Carrie - I think that was a wise choice to miss the parade and fireworks this year! I have a feeling they'll have them next year about this time! :D
I'm sorry to hear about your Mom. Did you try checking with the County Health department about visiting nurses? I know it's different depending on where you live, but you may be able to get a public health nurse to help your Mom with her injections. Or is it possible to let your 21 year old do them? When we lived in Virginia, a good friend of mine had a sister with MS who lived in Assisted Living down the street from me. She needed in injection every other day and her sister lived clear across town. I told Sherri that'd I'd do them for her since I was right down the street, but she decided that since I wouldn't let her pay me to do it, she'd let my daughter - 19 years old at the time, learn how to do it and pay her. So, we had a nurse from the facility show her how to do it and then I went with her the first few times until she was comfortable on her own, and then she was fine with it. Just an idea.
How is your son doing at camp?
Lori
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Carrie,
Glad to hear you are doing so well but I was sorry to hear about your mother. Lori had some great ideas and I hope they work for you. I hope your recovery continues to go smoothly.
Wendy
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Let me add my voice to those wishing you continued well-being in your recovery. It's good to hear from someone who's doing well! Hope your mom is OK too...
Tammy
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Hi Carrie
Iam so happy for your quick recovery. Your mom will also recover soon. Dont worry. You & your hubbie need some rest.
Shiva
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Hi all--
Sorry I haven't been around for a few days. The past few days have been HUGELY tiring--seems like taking care of the odds and ends regarding my mother's latest health development (the endless calls to make sure records from the hospital were sent to her PCP and assisted living facility, that the Visiting Nurse is in the loop, that there will be transportation--either my daughter or a free senior's van--to get her to her followup appt with her PCP next week, as my husband is already taking her downtown the day before, etc etc etc) is taking WAY more energy than it should. (I understand why logically, but that doesn't make it any less frustrating that sometimes when I set out to make 3 "quick" phone calls, I cannot get through them without crashing for a nap in the middle!
It turns out my mother will need to be on the Lovenox injections for the rest of her life (Coumadin is not a safe option for her, for a variety of reasons, even though an oral medicine that could be brought to her with her other meds would be "easier" to safely administer). She has learned to do the injections herself--the visiting nurses would only teach her (or someone else) to do it, but not continue to administer the shots without it costing something like $100 bucks a pop. So the aide at her ALF brings her a syringe with her morning meds, and she injects herself near her belly button.
Now the next issue to wrestle with is her insurance coverage for the Lovenox, which is apparently quite expensive. She doesn't have Medicare B, so no help there; I have to investigate how much help we are going to get from her secondary insurance. (She's on SO many expensive meds at this point, claims are starting to bounce, and I feel like I may begin bouncing too, as I try to appeal some of the nasty decisions being made...)
On a more positive note, I got my sutures removed yesterday, and washed my hair this morning. Yippee! (I have been such a wimp about the incision--but today I took a good long look at it, because I wanted to make sure I knew exactly where it was and not run my brush over it my accident!). I will post photos of it (pre- and post-suture) when I get a chance, because it may be informative for folks to see what a repeat retrosigmoid looks like (apparently they lengthened the incision a bit...)
Also, Dr Martuza prescribed Neurontin to help with the facial nerve pain I've been having (trigeminal--jaw/upper cheekbone mostly, sometimes temple and scalp) but I think I will probably not take it (researched the possible side effects and got duly freaked out...) He says the pain is most likely a sign of the trigeminal nerve "waking up" after having the AN that was compressing it removed, meaning it is a temporary issue that should resolve with further healing. Think I'll tough it out (and try to avoid triggers--big one now seems to be trying to do overly-complicated tasks with my mouth, like eat and talk simultaneously. I can live with being a boring dinner companion for a while, even if my husband feels differently...)
Thanks to every one for their support!
Carrie
PS--Lori, thanks for your suggestion. If it turns out my mother isn't able to continue administering her injections correctly, I'll certainly investigate local resources.
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Carrie -
sorry to hear about your mother's issues, but so glad to hear you are recovering well.
I would love to see pictures of a repeat retrosigmoid - although I hope to never have to do a repeat myself (no offense).
How's your son doing at camp?
Jan
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Carrie,
I would love to see the pictures of your scar! My neck was also affected during the first surgery and it was very painful for a long time. The surgeon told me to move my head from side to side. Stretching the scar (yoga vs. weight lifting) also helps enormously. I also got trigeminal issues after my second surgery. It was not to the point of pain but they lessened considerably, so hopefully yours will, too. The first three months post-op are by far the worst symptom-wise.
Sorry to hear about your Mom. I cannnot even imagine the stress you have now. It does not do wonders for your recovery. Do you have any siblings that can help take care of her while you tend to yourself? It is little consolation but the price of a nurse giving a shot is the same here in NJ!
Eve
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Carrie,
Sorry to hear about the stress being caused by your mom's continuing health issues and also sorry to hear she is not doing great in general.
On the other hand, you sound like you are doing wonderfully except for the stress, which cannot be easy. When you get a chance to post the pics, I'll be really interested to see them. Hope your recovery continues to go smoothly.
Wendy
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Carrie-
So sorry to hear about the issues with your mom. Wading through the insurance claims all by itself can be a full time job. We are still trying to sort things out from when my father in law fell and broke his hip (a week before my surgery!). It takes so much time to fight the insurance company on each claim. I know you know this , but don't push yourself too hard, Carrie.
Meanwhile, i can't wait to see the pictures of your incision! (Wait, did I just say that???)
Have you tried warm compresses on the side of your neck and face for the pain? I have found that to be very helpful. Moist heat is very good - 10 minutes on and then rest. Also, if you can find the joint where your jaw connects (right in front of your ear) and massage it gently wiht your finger, that also helps the pain. I posted somewhere else here on that, because several of us have had problems with facial/neck pain post surgery.
Hang in there!~
Debbi - off to see Dr. Louie today
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I had good luck using the vibrating massager on my face and jaw. Jaw pain is pretty much gone, about 4 weeks post-op...wow, time flies when I'm having fun!
Tammy
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Carrie:
Congratulations on your continuing recovery despite the draining demands being made on your time and energy. I'm sorry to learn of your mom's medical issues and the complexity of insurance and other bureaucracies that you have to deal with while attempting to recover from a second AN surgery. That you seem to be doing so rather adroitly is a testament to your character and strength, both physical and emotional. You're doing the right thing to help your mother at this time and that is highly commendable, especially as your recovery is taking place simultaneously.
As an official 'Senior Citizen' (who still thinks he's about 45. O.K., maybe 50) I quietly harbor a dread of ever being a 'burden' to my only child, my adult son (almost 29 and single). I think most parents do at some point. He is in denial of any such thing ever happening, as he sees me as near-invincible, especially after my relatively successful bout with an Acoustic Neuroma. I appreciate his confidence but wonder how he would react if I ever became less than self-sufficient or debilitated by illness. He replies that nothing would ever dare try to debilitate me. He said (in effect) "Dad, whenever you get sick, you get mad about being sick and will yourself better". A bit of an overstatement but amusing none the less. Fortunately, my wife is a decade younger that me and will likely be around to deal with any old-age infirmities I may encounter. However, she thinks I'll outlive her (my dad lived to age 92.) We'll see.
Carrie, I'm so glad you're progressing with your recuperation. Having the staples removed is always a bit of a landmark (was for me) and washing your hair (even for a man) is very rewarding when that simple act has been effectively denied you for some time. I hope the pain subsides and I admire you for not only dealing with it but avoiding using drugs to handle it. In that regard, you remind me of my intrepid wife. She's undergone numerous spinal and neck surgeries and always rejects pain meds afterward unless absolutely necessary, which is rare. You gals are tough!
Thanks in advance for the promised photos of your incision, for reference. Although they may not be not especially attractive, showing them is a selfless act and I appreciate you for thinking of it. May you continue to do well and may your mom have better days, too. :)
Jim
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thanks everyone, as always, for your kind words of support! And I'm glad to see the upcoming screening of my incision pics has a audience iin place! :D (I am still waiting for my husband to take the "after"--ie post-suture--photo; he has been trying to get back on track at work after what seems like a long time away from it, and not even for a well-deserved vacation!)
Eve, Tammy, and Debbi--thanks so much for the suggestions on ways of dealing with facial/neck pain. I will be certainly be giving them a try.
(And no, Eve, I'm my mother's only child, so when I can't do something for her myself, I find myself in the very interesting position of trying to successfully help a very confused old lady navigate whatever other resources are available--ie today I scheduled a cab to take her to a last minute doctor appt--local, thankfully-- that was at the "wrong" time for the van at her facility to help her out with, and though I called last night and again this morning to remind her, I had my fingers crossed till the last minute she'd remember to be in lobby at 12:45! Now I have to follow up with her doctor, because the report she came back with--that she'll need biweekly blood tests and blood transfusions every 3 weeks for the rest of her life--may be as bad as it sounds, but she may have gotten a detail wrong, as well. Sigh...)
Jim--it sounds like your son has your personality pegged! He and your wife will probably turn out to be right--you'll break the Guinness record not just for longevity,, but for making to an absurdly old age without anything ever having gotten you down for longer than 2.5 weeks, on a single occasion in 2006... ;) (But I'll bet if you ever do need him, you'll find he'll be there in the blink of an eye, without feeling burdened in any way. It's amazing how well-prepared we only children are to return a few favors, after all those years of having our parents all to ourselves!)
Jan and Lori--thanks for asking about how my son's faring at camp. He has been doing very well, though he seems to be suffering from some homesickness now (as well as terrible constipation--that's what he gets for being such a rotten eater!) He snuck a call in on his cellphone (a BIG camp no-no) during their trip day out on Cape Cod--beach and an amusement park, not to mention "real" food--I think even though he broke the rules, it was probably healthy for him to...
tonight's exciting activity will be mall-walking with DH! (It's been so hot this week that I've been walking as early in the am as possible, then again just before dark, but tonight there are supposed to be thundershowers. So I guess I'll be trading the mosquitos and slice-through-it humidity for AC and Musak!)
Carrie
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Carrie -
glad to hear your son is doing well at camp; I know that was one of your concerns going into surgery.
Have fun at the mall :D Enjoy the Musak ;)
Jan
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Pick up a few nice things for yourself while you're at the mall! Lots of sales going on, you know! ;D
Glad your son is doing okay. I guess camp food isn't so great, huh? Must not be a camp for future chefs?
I'm also glad your Mom made it to her appointment. I know how you feel - before my parents moved into the Veteran's Home, I had to make sure they had rides everywhere. I'm one of 4 daughters, the only one who lives out of state, and for some reason, I wound up with that job. Go figure. I also had to follow up with the doctors to make sure of what was said. It was like that telephone game - where what you hear from them isn't even close to what the doctor said. I finally convinced my sister who lives near my parents to go with them to appointments so she can write down what the doctor says so she can report it back to the rest of us.
Anyway, glad you're feeling well and are up on your feet!
Lori
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I'm one of 4 daughters, the only one who lives out of state, and for some reason, I wound up with that job.
Funny how that works out.
My dad is one of fourteen (yes, fourteen) - but he was the only one that my grandparents ever called when they needed something. He isn't even the oldest, but for some reason he was the chosen "one".
Jan
PS Carrie - did you purchase anything fun at the mall? Leave it to Lori to suggest that ;)
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Well, I was going to suggest picking up a few nice things for ME, but I didn't want to seem too pushy! ;)
Lori
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No, I didn't shop last night, just dropped at the end... ;)
My husband, however, spent the whole time I was power-schlepping in Williams-Sonoma, buying a mechanized rock salt mill to match the way cool gourmet pepper mill he'd picked up at a different location last week (you don't have to turn, twist, or crank it, you just turn it over and it grinds the peppercorns/rock salt into a fine, savory dust...) Something about my surgery seems to have created a craving in him for highly seasoned food, it seems...
OK, here (if I can figure out how to post them) are pictures of my incision. I feel especially stupid now, after checking out all the pics on JulieW's thread, because my incision really looks like a translab incision, but I distinctly remember having the following conversation in pre-op with Dr Martuza's chief resident:
Me: Can you remind me again what approach you'll be using?
Dr F: Retrosigmoid/suboccipital.
Me: So, even though you're sealing things up with belly fat, you're not doing the translab approach?
Dr F: (Nods head).
Maybe I misheard? Maybe his head was shaking horizontally vs nodding up and down and I was directionally challenged (or sedated?) at the time? Please tell me what this looks like (the first photo DH took of my incision Tuesday morning--day after the sutures came out--and the second I took myself this morning after my shower, blurry but still doesn't obscure the top of the incision as in photo #1).
I can't believe I've gone through this surgery a second time and am still confused about which approach was used. (I really am a proactive, well-informed patient, usually... ::)
(http://cur.io/img/inc1.jpg)
(http://cur.io/img/inc2.jpg)
Carrie
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I think each hospital and surgeon has their own routine of and where they do the incisions and may make it hard to even identify what type of incision it is. The recent pics from House of mid fossa does not look like my 2 mid fossas. Mine are both rectangle shape while theirs is a question mark look.
One of my daughters has had Lasik eye surgery today. We have the grandkids here for overnight. (it is nap time) I do not think I could handle being awake and having that done! Her husband said she did ok.
Cheryl R
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That's good to know, Cheryl! I'm pretty sure I heard both my doc and his chief resident identify the original approach (which they'd be reusing) twice as retrosigmoid, but my incision looks SO different from the photos Jan (leapytwins) has posted of hers.
So glad to hear your daughter's Lasik surgery went welll!
Carrie
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Carrie,
Your approach looks like retrosigmoid. Many surgeons use belly fat even with retro to prevent muscle to dura adhesions. Your scar is very similar to mine from the first surgery but mine is much longer but straight just like yours. Many surgeons I visited suggested retro after the original partially because that is all they are trained in and partially because my tumor was more accessible using it vs. the translab. Your scar looks great: delicate, well done. Do you have any incisional pain now?
Eve
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Carrie-
Wow - nice pictures! You incision looks a lot like mine, and mine was translab. But, I think Cheryl's right that each surgeon has his own favorite way to do the incision. Mine is much closer to my ear and really follows the shape of my ear, so it is more curved than yours. You should heal nicely though, and the incision will be hidden in your hair. I just can’t believe this is your second time around!!
Meanwhile, the salt grinder sounds way cool
Debbi
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Carrie,
tickled that you are doing well.. and we know you had a FAB team at MGH/MEEI..... pics look great and continuing to send wellness wishes to you for speedy recovery.
Next time you do a follow up in Boston, let me know... would love to do lunch... I'm live near the highway for ease of meet.
Hang in there!
Phyl
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Looks retro to me. :)
The translab incisions, including Debbi's, are closer to the ear, or the hairline around the ear. This one is more to the back of the head.
Steve
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Thanks, Eve and Steve, for the confirmation. Eve--no, I haven't had much incisional pain at all, other than a twinge of "tightness" in spots from time to time; the real problem has been my neck, which though still stiff is finally not interfering with sound sleep (before last night I had to break up lying in bed with at least a couple of hours upright in a recliner...).
Phyl--thanks for the good wishes! And I'd very much like to meet other area ANers--sounds great!
Carrie
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Carrie -
obviously I'm no doctor, but for what it's worth your scar looks retro to me too.
I've seen other retro scars and they seem more rounded than mine - mine is kind of pointy and angular - but I think that was just my docs' preference.
Jan
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Carrie,
Nice scar! It looks like retro to me too. For translab i believe they fold the ear forward to get it out of their way, and I don't think that would have been possible from where your incision was.
If you ask for a copy of your surgery report it will give you more details. Each surgery requires a report on what took place during the procedure. You could ask your surgeon's office for a copy. Or ask the hospital's records department for a copy of the surgical report. Some of the terminology on these reports can be a bit technical, but it will give you more information on your particular case.
Regards,
Rob
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Thanks for the confirmation, Jan and Rob! And I will certainly follow up on your suggestion, Rob--especially considering the PIA that not being able to retrieve a single hard fact about my '89 surgery was, I have a very strong incentive to keep good records this time around...
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Hi, Carrie
I haven't had much incisional pain at all, other than a twinge of "tightness" in spots from time to time; the real problem has been my neck, which though still stiff is finally not interfering with sound sleep (before last night I had to break up lying in bed with at least a couple of hours upright in a recliner...).
Carrie
I have the same tightness on my incision--no pain. The neck is the issue. I've had to sleep in shifts--4 or 5 hrs at a time--due to neck stiffness that develops into pain if I don't address it immediately with Tylenol, a heating pad, or by just getting up and moving around to loosening my neck muscles.
Your scar's placement appears to be about the same as my retorsig scar. One of these days I'll post a photo of it.
Syl
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Carrie,
Thanks for the update on how you're doing -- I was on vacation and haven't had time to catch up on how everyone is but you made it easy. Your scar/incision looks like its really healing nicely. I'm glad to hear you're doing so well, but sorry about the neck pain. I get the feeling this is a universal problem with AN surgery. Hope that goes away soon. Are you using one of those little electric massagers (the little ones you can get in Walgreens or other drug stores). Tammy told me they really help and I plan to get one before I have my surgery.
Wendy
P.S. I found an article online that gave a blow by blow decription of retrosigmiod along with diagrams. Your incision looks exactly like the diagram.
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It looks like a retrosig incision to me. My doctor described the location of a translab as being two finger widths behind the ear. (I'm sitting here measuring mine with my fingers together right behind my ear and sure enough that's exactly where it is.) Most of the translabs somewhat follow the curve of the ear starting at the top of the ear and curving downward to the base of the ear. Surgeons may vary the angle somewhat, but a translab with normal anatomy should be fairly close to the back of the ear and hairline.
Rob, I believe you are right that they fold the ear forward to get to the tumor with a translab.
I always ask my doctor for a copy of my operative report, the pathology report and the discharge summary to give me a better idea of what went on and remind myself why my recovery has not happened overnight. It will list the approach on the report.