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ClaireMom

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My daughter Claire had
surgeries in 2005 & 2006.

Posts: 28
Savannah, GA
Gender: female

Claire's Recovery
Nov 8^th, 2005 at 11:17pm

It has been exactly 2 weeks after surgery, but Claire is going through strange symptoms. I searched this website very throughly to see if those symptoms were experienced by other people, but I was not able to. Her headache was gone at the time of discharge, and she was healing very well. We came back to GA last Thursday night, and she was still on strong dosage of steroid. The steroid was tapered off as of Saturday. Starting Sunday, she is having bodyaches all over. Just a mere touch with my finger on her arms or legs makes her scream. We contacted Gary Steinberg's team, and Theresa said that she never heard of it, and wondered if it is viral, something unrelated to surgery. However, she has gone through a major traumatic surgery 2 weeks ago, and I cannot but help thinking that it is related. Right now her knees, thighs, and upper arms hurt a lot on both sides. Has anybody experienced this kind of generalized muscle pain after surgery? I want to hear from you.

Other than that, she is in good spirits. She was in school for a half day today (exactly 2 weeks after surgery), and wants to be in school full day starting tomorrow.

Alexis

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Claire's Recovery
Reply #1 - Nov 9^th, 2005 at 12:25am

Hi Alexis,

I haven't heard of the symptoms you described above; however, it doesn't mean that it isn't possible. Has Claire seen her local internist or neurologist for their opinion? May I suggest obtaining opinions from other MM experts to see if any of their patients have experienced similar symptoms such as Claire's if you aren't able to find any answers? Smiley

It is quite puzzling, but since all of our situations are different, I'm not surprised that we all experience different things at different times pre and post op.

At first, I too was thinking that maybe it was something viral, especially as we are approaching the flu season, and body aches are common; however, I noticed you mentioned that she "screams" when you merely touch her with your finger! Cry

Was Theresa able to offer you any other advice or recommendations? Any suggestions on what she could take to ease the pain? Is the pain accompanied with any other symptoms such as fever, etc?

Please keep us posted. I too am interested to see other's replies...

Take care,
Shan

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« Last Edit: Nov 9^th, 2005 at 12:26am by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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tiomasai

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Arriba Arriba!

Posts: 246
Queens, NY,
Gender: female

Re: Claire's Recovery
Reply #2 - Nov 9^th, 2005 at 8:12am

Alexis:

Just keep in mind that post surgery for many people their immunity is low. While it may be related to the surgery, she may have picked up something else. 2 months post surgery, I got bronchitis. I would take her to her regular doctor and make sure she doesn't have any type of infection.

School 2 weeks after surgery! Kudos to her -- I was a big baby; I waited 2 months!

Hope she gets better soon,
Trina

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ClaireMom

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My daughter Claire had
surgeries in 2005 & 2006.

Posts: 28
Savannah, GA
Gender: female

Re: Claire's Recovery
Reply #3 - Nov 9^th, 2005 at 4:02pm

Thanks Shan and Trina.

She stayed in school all day today. She said that she would be too bored if she stayed at home. She still had bodyaches to a slightly lesser degree. At least she does not scream when I touch her. Stanford team did not think much of it. We are going to see her neurologist tomorrow. We are hoping that the pain will go away soon. It seems that post surgery symptoms manifest themselves in many different forms.

Alexis

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Claire's Recovery
Reply #4 - Nov 10^th, 2005 at 9:54am

School all day? Good for Claire! What a trooper! (I think I used to think of every excuse to NOT go to school.. Undecided

) oops! hee hee..

Anyway, I'm glad to hear that she is not as sensitive to your touch today. I hope that you continue to see improvements. Please let us know how her appointment with her neurologist goes today. I hope he can offer you more information. Sometimes it's the unknown that scares us the most.

Other than that, it was so good to hear that Claire has such a great attitude of wanting to go to school... She is definitely an inspiration! ; Grin

Take care,
Shan

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"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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ClaireMom

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My daughter Claire had
surgeries in 2005 & 2006.

Posts: 28
Savannah, GA
Gender: female

Re: Claire's Recovery
Reply #5 - Nov 10^th, 2005 at 9:04pm

While at the neuro's office, she had a TIA lasting a few minutes. It started with tingling sensation on the left leg, and then she couldn't move her toes that well, and at the last, her tongue got out of control for couple of minutes. He thought that it was one of TIAs that are part of post-surgery symptoms. He doubled her Aspirin dosage (she was on 81 mg), and planned to see her in two weeks. Her pain is less now, but this was the first conspicuous TIA she experienced after the surgery. WAtching it made me scared.

Alexis

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Claire's Recovery
Reply #6 - Nov 10^th, 2005 at 9:58pm

Wow Alexis, I'm sorry to hear about Claire's TIA; however, I'm glad that it happened in the neuro's office! I'm sure it was quite scary for both you and Claire. I hope that the increase in aspirin will help her feel better. Did he increase her aspirin intake due to the TIA or because of the recent pain she has been feeling?

Hope you all have a safe and relaxed 3-day weekend.

Take care,
Shan

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"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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nikki

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My Mom has MM

Posts: 195
southside, USA, usa, 396, 219, AL, Alabama
Gender: female

Re: Claire's Recovery
Reply #7 - Nov 11^th, 2005 at 3:35am

I hope evrything is okay with Clair. Did they tell you anything about the pain she was having? I don't remember ever hearing of anything like that before. My mom can't really verbalize good enough to tell us if she was having pain like that, but she has certainly never hinted at any pain except her shoulder( she had problems with her rotator cuff long time before any of this MM started). Please keep us posted on how everything goes

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kotipup

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: Claire's Recovery
Reply #8 - Nov 11^th, 2005 at 9:51am

I can't help but wonder if the all-over body pains were related to the sterroid. Have they continued to get better as she's been off of it? When my mom (not a MM sufferer) was on prednisone she got all-over body pains and her legs were so bad that for a couple of days, she could not get out of bed. She didn't notice any symptoms like that until after she started weening it.

I'm sorry Claire had a TIA. That must have been scary. I hope you don't see any more stuff like that.

Jenny

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ClaireMom

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My daughter Claire had
surgeries in 2005 & 2006.

Posts: 28
Savannah, GA
Gender: female

Re: Claire's Recovery
Reply #9 - Nov 14^th, 2005 at 4:03pm

Thanks, Nikki, Jenny, and Shan.

Claire had multiple TIA's, and episodes of weakness throughout the long weekend. Today, she came home early with severe headache. We placed a call to STanford, which we haven't heard back from yet, but, in the meantime, we asked our neuro to order MRI/MRA, since that's what Theresa told us to do at discharge when symptoms occur frequently. The MRI is scheduled for Friday at 7PM. They did not have any other opening until Thanksgiving.

Jenny, you are probably right in saying that the bodyaches are streoid related. She is not complaining that much any more about bodyaches. My husband Stanley, who is also a cardiologist, suspected it from the beginning, and we were hoping that it will pass by when she completely weans off of it.

These frequent TIA's scare me to death. She did not even have them as frequently before the surgery. I was thinking, more hoping, that surgery will magically take care of everything, but I wonder what's in store for us.

Alexis

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Seachelles Old-Time Poster Offline God never gives us more than we can handle. Posts: 681 Fredericksburg, USA, usa, 474, 157, VA, Virginia Gender:	Re: Claire's Recovery Reply #10 - Nov 14^th, 2005 at 4:55pm Alexis, I'm so sorry to hear about Claire. She's such a beautiful girl. I saw lots of pictures when I went out for my brother, Shane's surgery. He said that he met Claire. Hopefully, she won't have anymore. I will be praying for her and keeping Claire and your family in my prayers. Michelle
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ClaireMom New Poster Offline My daughter Claire had surgeries in 2005 & 2006. Posts: 28 Savannah, GA Gender:	Re: Claire's Recovery Reply #11 - Nov 14^th, 2005 at 9:21pm Thanks, Michelle. We met Shane indeed, and he gave Claire a little pink beanie baby. I thought that it was soooo sweet. How is he doing with the surgery? I was thinking that he would have surgery by now. Alexis
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Seachelles Old-Time Poster Offline God never gives us more than we can handle. Posts: 681 Fredericksburg, USA, usa, 474, 157, VA, Virginia Gender:	Re: Claire's Recovery Reply #12 - Nov 15^th, 2005 at 11:26am Alexis, Yes, Shane had his surgery on Wednesday and he is doing so well. Very clean incision, no TIA's since the surgery, and he was up and walking the day after surgery. He is out of the hospital and happy to be out, I know. Continuing to say prayers for Claire. Please give her a big hug for me. Michelle
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cass/kate Experienced Poster Offline Daughter Kate has moyamoya. Posts: 247 Dallas, USA, usa, 270, 251, TX, Texas Gender:	Re: Claire's Recovery Reply #13 - Nov 15^th, 2005 at 1:46pm Dear Alexis - I was so sorry to hear about Claire. Jill told me how adorable she is. You are all in my prayers and I will be sending positive thoughts your way. So is my daughter, Kate. Cass
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