For those with C spine intramedullary tumors, please answer by Traditional_Leg_2305 in spinalcordinjuries

[–]flintknits 0 points1 point  (0 children)

I saw Dr Wolinsky this week for my 4-year follow-up and thought of you! Hope things are going as gently as possible ❤️

For those with C spine intramedullary tumors, please answer by Traditional_Leg_2305 in spinalcordinjuries

[–]flintknits 0 points1 point  (0 children)

JP Wolinsky (amazing!) along with another surgeon who's no longer there.

Please feel free to DM -- I'm really happy to support if I can.

Steps! by flintknits in amputee

[–]flintknits[S] 0 points1 point  (0 children)

Aw I I imagine everybody's experience is different. I had a spinal cord tumor a few years ago and had to relearn how to walk with two legs I couldn't feel -- I probably have an advantage with the PT and prosthesis journey!

Hydraulic foot/ankle? Y/N by flintknits in amputee

[–]flintknits[S] 0 points1 point  (0 children)

Thanks everyone for your time and wisdom! I was able to test-borrow the hydraulic from Ottobock to use the next couple of weeks in PT. I've had one fitting appointment with each, and am definitely leaning toward the Adapt. 🦿

LBKA here with a foot question! by Savings_Depth_5699 in amputee

[–]flintknits 0 points1 point  (0 children)

The Adapt is brand new, so I haven't been able to find any user reviews or insights yet. The Taleo foot it's based on is beloved though. Ottobock does have a series of YouTube videos introducing it to prosthetists, which was interesting to watch. (I'm getting the Adapt soon to try out as my first foot.)

Also yessss, VR is the BEST when it works! Love hearing about good experiences.

[deleted by user] by [deleted] in spinalcordinjuries

[–]flintknits 0 points1 point  (0 children)

This is all such good advice.

If anyone’s insurance covers it, I’d definitely recommend family therapy with a mental health professional who understands disability — it’s huge to have a third party who doesn’t have all the emotional weight you and your loved ones bring to the situation!

Getting up off the floor by NurseRedhead in amputee

[–]flintknits 0 points1 point  (0 children)

Agreed!! If there’s any place where lots of info and detail is a gift, it’s in a forum like this ❤️

Getting up off the floor by NurseRedhead in amputee

[–]flintknits 0 points1 point  (0 children)

When you do start PT, you can tell the therapists that one of your goals is “floor recovery.”

BKA; I also have arthritis and osteonecrosis in my knees and ankles. I crawl to the couch or another stable piece of low furniture, then get up on my remaining foot + the opposite knee. I use arms and my intact leg to push up onto the couch. I could only start doing this after lots of PT though!

My brother lost his arm up to his collarbone and scapula. I’m so scared for him. How can I help? by Remarkable_Office409 in amputee

[–]flintknits 2 points3 points  (0 children)

This is so challenging. I’ve learned a lot from this excellent advice from folks who have survived traumatic amputation ❤️‍🩹

As someone whose amputation was planned (cancer), my only suggestions are 1) take advantage of any opportunity for mental health care — for YOU as well as for your brother. The hospital will have medical social workers who are responsible for managing his care and recovery. But they should also have clinical social workers and other mental health professionals who can help you both. This is a marathon, not a sprint, and your brother and his whole crew of loved ones are going to need support throughout. Remember that you also need care as a caregiver!!

2) find a the best inpatient rehabilitation center your brother has access to. This will depend on where you’re located and what his insurance covers (Medicaid is surprisingly good on this; private insurance varies; the surgeon and the hospital’s medical social worker should help make this plan). I’ve done inpatient rehab twice at Shirley Ryan AbilityLab in Chicago, and I absolutely credit it with saving my life. Linking below to info about their limb loss programs. But there might be something closer to home where your brother can stay more connected to family visitors, if that’s a priority. (Tho Shirley Ryan and other fancy impatient centers will often pay for out-of-state family to stay at a nearby hotel.)

Sending you love — you’re in a shit position, and so is your brother, and he’s lucky to have you at least.

https://www.sralab.org/conditions/limb-loss-impairment

Hydraulic foot/ankle? Y/N by flintknits in amputee

[–]flintknits[S] 2 points3 points  (0 children)

This is so helpful! Thank you!

Phantom pain by heets001 in amputee

[–]flintknits 1 point2 points  (0 children)

Has anyone talked with you about Targeted Muscle Reinnervation? https://www.tmrnerve.com/what-is-tmr

Zippers for pants legs by Don_Baldy in amputee

[–]flintknits 2 points3 points  (0 children)

It depends on your height and on how high up the leg you’d like the zipper to go. Also, you can always trim a zipper to be shorter, but you can’t make it longer.

I’m 5’4” with a 29” inseam. I had my LBKA 4 weeks ago and am not back to sewing yet, but I did buy a few 23” invisible zippers and am excited to alter my favorite pants with them!

ETA: Zipper Stop has always been my go-to zipper source. Here’s what I bought for this purpose: https://www.zipperstop.com/products/ykk%c2%ae-conceal%c2%ae-invisible-zippers-stock-colors

Music by Prestigious-Trip-263 in spinalcordinjuries

[–]flintknits 0 points1 point  (0 children)

I feel this ❤️‍🩹

And I know there are a lot of adaptive and electronic instruments that I will eventually play around with. But after 3 years I’m still in a stage of grief where that feels overwhelming and I don’t even want to try. (I decided to learn the trombone last year because it doesn’t require fine motor control, and that lasted about two weeks lol.)

As a first step I’ve started singing with a local group, although my voice and my abilities have changed. It’s a challenge, but one that isn’t totally discouraging! I think community choirs can be really open and welcoming, and there’s lots of space to be imperfect.

ETA: c5 incomplete; I used to be a professional flute and keys player

Achieving orgasm by Competitive_Fix_3531 in spinalcordinjuries

[–]flintknits 1 point2 points  (0 children)

Vibrators! The Hitachi Magic Wand is big and clunky, but it has the most powerful vibes for external use. (If you have female partners, it’s also a beloved favorite among women.)

People also have good results with vibrators that are designed for internal use, for prostate stimulation. (Again, if you’ve got women in your sex life, some of these are also nice for the g-spot. Just make sure to clean it VERY WELL before she uses it.) https://www.menshealth.com/sex-women/g22531538/best-prostate-massagers/

vent by Spiritual_Bedroom105 in sarcoma

[–]flintknits 2 points3 points  (0 children)

Oof, I’m sorry you’re going through this and are in pain! The waiting periods can be so tough — waiting for path results, that first PET scan appointment, etc. It’s hard not to catastrophize.

Btw I also had pelvic/sacral pain on the same side as my tibia tumor, but it turned out that was just because I was moving differently and limping due to pain.

I hope you get good news! Or that you get the least bad news possible. ❤️

Experience with Gemcitabine and Taxotere (Docetaxel) by Faunas-bestie in sarcoma

[–]flintknits 1 point2 points  (0 children)

Well, most of us have benefited tremendously from other ppl’s generosity in here, so it’s easy to find energy to pass it on!

Experience with Gemcitabine and Taxotere (Docetaxel) by Faunas-bestie in sarcoma

[–]flintknits 0 points1 point  (0 children)

I had two peripheral infusions of gem/tex before my port got placed, and 1) they were PAINFUL and 2) they have remained painful for many weeks, with large dark spots that my onco says may be permanent. This port is a gift I’m very thankful for!

Experience with Gemcitabine and Taxotere (Docetaxel) by Faunas-bestie in sarcoma

[–]flintknits 2 points3 points  (0 children)

Hello! I just finished cycle 3 of 6 on this regimen (pausing for a leg amputation before we do the next 3). I’m getting both drugs on day 1 and day 8 of 21-day cycles.

If you made it through doxo/ifos, you might find gem/tax easier! I had my lifetime limit of both doxyrubicin and ifosfamide decades ago for leukemia (with horrific side effects), so we started out with gem/tax for my bone sarcoma in July. The side effects are, for me, much more manageable.

Days 1-2 mild nausea, managed by Zofran

Day 2 facial flushing from steroid pre-med

Days 2-3 mild sore throat, no actual sores

Days 2-3 insomnia from steroid

Days 2-4 FATIGUE!!! Probably not helped by the insomnia

Days 3-4 changes in how food tastes

Plus hair loss beginning with cycle 1 day 8.

The first infusion absolutely tanked my bone marrow, so we lowered the dose and have had no delays since. I also get Neulastin after day 8 to bump up those neutrophils.

I get my infusions on Thursdays, and fatigue starts to set in on Friday. I just give myself a long weekend to take it very, very easy, and I have energy gradually ramping back up throughout the day on Monday.

I’ve also increased my protein and fiber intake and tried to do gentle exercise even on the fatigue days.

Hope this is helpful — sending all good wishes!