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05-16-2013, 06:35 AM
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#1
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Mri of spine shows a syrinx?
I am getting IT Herceptin for spinal cord mets, has anyone ever heard of a syrinx, or known anybody with this. This is located above and below the lower lesion in the thoracic spine.
So does this mean the It Herceptin is not getting to the area?
Google is kinda of scary, especially since some of my pain and altered neuro symptoms fit. I am need of prayers, I had one of those days yesterday, that when I got my mri results back, after goggling, faxing reports, and hurry and wait for the cd and films to be delivered to Neurosurgeon and for him to review, which means probably will not hear from him till next week.
So after a disagreement with my wonderful spouse over a past issue with my family. , I basically cried myself to sleep, praying that I wake up able to move. The risks of me being paralyzed from bra line down are pretty high.
well my 3 year old Labrador made sure of that at about 430am this morning, because she wanted out and was hungry. Oh by the way my hubby went on his planned overnight fishing trip with his dad, brother. He usually takes care of dogs before work. i think escapism is his way of dealing with the medical changes after all these years. Very supportive at home , but avoids the Dr. Offices even for himself like the plague. I did get to see the sun come up, and have time to post and check a few posts. sorry for the morning rant of frustration.
Time for God time, shower, then wake up a grumpy 13 yr old for school, who was up making messes in the kitchen after midnight.GRRRR. I hope he is happy today. then go get cd's of Mri, then go get treatment. Thank you all for listening
Prayers and Gratitude to this Board and all of its members past and present whose thought and journeys are all captured here for those of us to seek out and find our place, find caring, understanding, clinically based answers.
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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05-16-2013, 10:39 AM
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#2
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Mri of spine shows a syrinx?
Hi Darita Sorry to hear you are having a rough time. Sending you hugs from CA. Hope you feel better soon !
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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05-16-2013, 12:31 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Mri of spine shows a syrinx?
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 05-16-2013 at 01:29 PM..
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05-16-2013, 10:43 PM
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#4
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Mri of spine shows a syrinx?
Darita, Please know that you and your family are in my prays. Gods blessings all around. I will be praying very hard to hear some good news soon.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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05-17-2013, 06:16 AM
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#5
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Mri of spine shows a syrinx?
Darita
Sheesh! You just can't seem to catch a break my friend!
Having never heard of a Syrinx...I googled it before starting this note too. It's easy for me to say, "It doesn't sound like there's any imminent danger" because it's not my spine, and I'm not walking around in your skin. But among others, I read the article from the Mayo Clinic site and it seemed to say that this things develop slowly...so it seems you have some time before you need to "panic".
Having said that...if I were you...I'd call my med onc and the neurosurgeon's office and ask for a callback. Somebody should be answering your questions about how concerning the development of a syrinx is for you. And, don't let anyone at the neurosurgeon's office kid you..the doctor can get the scan info anytime he/she needs it. Even if they don't have the official report yet...they're trained to read that stuff too!
In the meantime, take a deep breath...and try not to borrow trouble. Whatever the true story of dealing with a syrinx ends up to be...you'll handle it...you always do!
And girl! You are one awesome wife and mother! Forgiving the fisherman, and the grumpy mess-maker is definitely the 'right' thing to do...but I'm not sure many of us could do it gracefully as you have.
Sending love and strength to you across the miles.
Keep us posted!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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05-17-2013, 03:56 PM
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#6
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Mri of spine shows a syrinx?
Thank you for your feedback and prayers. Denise I just read your post. That is like the reviewer, for all of my imagining studies, was denied a cervical Mri because it was not part of the CNS!!! I would frame that letter.
Should hear from the Nuero surgeon on Monday he is comparing the last scan to the new one. Grumpy got up and had a great day. And the other came home no fish but very caring and glad to be home. God is still Good and I got my first dose 0f 60 mg It her yesterday, had Breakfast with my hubby, after taking 13yr to school. Came home took 3 hour nap. Head is a little more together, faith and hope are back in the the straight lines of my path, as we all occasionally have our moments. Thank you
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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05-26-2013, 05:35 AM
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#7
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Mri of spine shows a syrinx?
Darita,
Ready for an update?
Thinking of you...sending prayers...
Denise
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05-26-2013, 06:01 AM
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#8
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: Mri of spine shows a syrinx?
(((Thinking of you))))
Paula
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05-26-2013, 07:58 AM
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#9
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Mri of spine shows a syrinx?
THe Central Nervous system consists of the brain and spinal cord (cervical, thoracic, and to the very upper lumbar region and may even contain the conus medularis(rest of the lumbosacral region) and even the Cauda equina within the rest of the lumbar area and in some views the optic nerve/retina and parts of the cranial nerves)--http://en.wikipedia.org/wiki/Central_nervous_system
The person who told you that was ignorant, as you obviously know and this shows the need for asking your insurance company for a physician review of your need for a cervical study by a neurologist, neurosurgeon or radiologist specializing in imaging of the nervous system for others who migh face similar situations.
More pertinent to your present needs:
Dr. Ulrich Batzdorf of UCLA (now emeritus, I think) has made syrinxes his area of special interest. I do not know if he still sees patients (he is emeritus) but last time I looked at the UCLA website it looked that way. He has trained at least one surgeon who works out of the Barrow Neurological institute (in Arizona, I think) and would at least be aware of others who shares his expertise in syrinxes and might perhaps be able to stear you their way.
As he might be emeritus and may have more time on his hands, perhaps an email to him might direct you to someone with special expertise closer by.
http://www.uclahealth.org/body.cfm?x...etail&ref=1487 contains his email address.
As you know, I rarely make any type of recommendation here as I am certainly not qualified to do so... perhaps it is our recent loss of Sheila, Christine, Chrisy and others making us all feel so helpless that encouraged me to try to help since I do have some information here ( gained from several I know having consulted with Dr. Batzdorf, although over 15 years ago)
Hope this helps. |
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05-26-2013, 10:47 PM
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#10
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Mri of spine shows a syrinx?
Lani thank you for this information. I appreciate your dedication and labor to help us all.
I do see a Barrow's Neurosurgeon. I dropped films off the other day, So hopefully will here back from him after the holiday. He is good at squeezing me in for appointments, and shows me the exams and explains it to me. Then he still will present to the tumor board as well.
I was able to move up the dose escalation to 80 mg IT herceptin last Thursday, with no problems. I also take IV herceptin and Tykerb, still on 1 mg decadron.
Prayers for Christine's girls, and the others whom we have lost and are struggling right now as well. Lani thank you for always being there with info and updated help.
Darita
I will follow up with the other Dr as well,
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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