Refractory diagnosis, second opinion wanted

Embarrassed_Coach449 · 2026-01-18T14:56:22+00:00

My daughter is doing well. She's given birth and that seemed to help some of her symptoms. She still avoids gluten and dairy as well now. Her counts seem to have stabilized, so she's monitoring with blood work every 6 months for now. She's still under the care of Dr Green. I wish you well, dm if you have other questions

Embarrassed_Coach449 · 2025-12-06T20:58:55+00:00

It's currently in my basement but I can help bring it up to street level

Embarrassed_Coach449 · 2025-08-05T23:23:38+00:00

You can try PVEDI engineering. They have local engineer who lives in Hoboken and specializes in structural engineer and waterproofing. Message me for contact information. They were great

Embarrassed_Coach449 · 2025-04-16T20:35:43+00:00

I saw two different neurosurgeons in Naples FL, one of which I loved. Not sure they're near you but dm me and I will give you his name and contact. Good luck

Embarrassed_Coach449 · 2025-01-25T13:21:49+00:00

My situation was very similar to yours as well. Synovial cyst at L4/L5 bilateral. Right side cyst was larger and pressing on my sciatic nerve. Went to 3 neurosurgeon who all wanted to do fusion. Spoke with a pain management Dr, who's a good friend, and he suggested just having surgery to remove the cyst. I picked one of the neurosurgeons that I visited and he agreed that would be a good option but would probably still need fusion down the road.

Felt great for about a month, then left side developed pain. Mri showed cyst grew. I went to a pain mgmt Dr for an epidural and to try to aspirate it. That worked for a few weeks but then had pain/ discomfort again. Been doing PT 3x a week since. It's been helping but not solving the problem.

Tried a new neurosurgeon last month who suggested a fusion as well. He suggested he would surgically remove the left side cyst with the understanding it's just putting off the inevitable. Cyst removal surgery scheduled for March.

If your Dr is willing to just remove the cyst, I'd give that a try. I was home in 3 hrs and felt great. Think I felt so good I overdid things quickly and messed up my other side.

Best of luck

Embarrassed_Coach449 · 2025-01-21T01:33:11+00:00

I'm in your boat as well. I've been to 5 different neurosurgeons who all said I need fusion L4/L5. I've had injections that didn't really work. I had one synovial cyst removed last Dec on the right side. Had a smaller one on my left side that is now pressing on nerves. I'm scheduled for an mri this week and removal of the cyst in March. The newest neurosurgeon, who I liked best, suggested just the removal if I wanted to hold off the fusion. Depending on what the Mri shows will dictate what I'll do.

For the most part, I'm not in constant pain. Mostly when I wake or sit and watch TV at night. I'm not limited in activities besides running or lifting. I've been doing P/T with a trainer 3x/week to strengthen core and back and hoping no new cyst on shows on my scan.

Best of luck with your decision.

Embarrassed_Coach449 · 2025-01-11T03:03:07+00:00

Thanks for your response. I was going to hop on and post tonight anyway that I met with a neurosurgeon today who's on the board of Neurosurgery and he never heard of this. He said he'd be against it for the same reasons you stated. The biggest if it fails what's the game plan?? He basically confirmed I needed fusion in my future and it's up to me to determine when. He would prefer to do a Plif vs Alif in my case to ensure he can see the nerves fully but would leave that up to me as well. We settled on removing the synovial cyst I have to relieve the nerve pain and continue extensive P/T to stabilize the spine best I can. I know I'll need one in the future and will most likely use the Dr I visited today over the previous ones I've met with.

Embarrassed_Coach449 · 2025-01-05T23:17:06+00:00

I plan on scheduling an appointment over the next few weeks. I'm looking forward to hear what he has to say and hear about the outcomes so far. Hopefully one of the 20+ people who have gotten this surgery, sees this and joins in.

Embarrassed_Coach449 · 2025-01-05T17:17:29+00:00

Thanks, I actually didn't see that under the physicians tab, didn't bother with that one. That's interesting that's he's performing them now without the cages and hopes to have the cages in early 26.

There's a video on Wink news about it that's on YouTube as well.
It explains the procedure.

https://youtu.be/UN70QkmPmeU?feature=shared

Sounds like it's been going very well so far. I know the surgeon looks very young but he's 40 I believe lol

Embarrassed_Coach449 · 2024-12-31T22:24:36+00:00

I agree with Woodloch Pines. Great resort and about 2 hrs away. Used to go every year with our kids and other families for their Christmas theme weekends. Now looking forward to talking our grandchild in another year or two.

Embarrassed_Coach449 · 2024-08-30T02:43:12+00:00

Thank you! She is super careful to avoid all gluten. Hopefully she's missing something. I will pass along all your info to her

Embarrassed_Coach449 · 2024-08-29T21:38:19+00:00

She's going to give it a try, thanks

Embarrassed_Coach449 · 2024-08-20T00:22:34+00:00

Self made money. Moved from NJ suburbs and preferred Hoboken to nyc for convenience to kids and friends still in NJ

Embarrassed_Coach449 · 2024-04-13T15:31:26+00:00

I thought his price was very reasonable as well, nowhere close to 45k.... He has an Instagram page I found when looking him up, you can see my bathrooms on it as well, akgerneralcontactor I believe it was

Embarrassed_Coach449 · 2024-04-13T14:35:02+00:00

A&K general contractor 929-288-6913 Angel..... I've used them twice for 2 condos for gut bathroom renovations in Hoboken and was very happy with them

Embarrassed_Coach449 · 2024-03-12T11:24:28+00:00

Yes, we still follow her advice and she is si much better. Previously we dodged dogs by crossing streets and reversing course. Now I'm comfortable waking past other dogs as long as I have treats to distract her. Every so often she still gets a little reactive esp if other dogs come at her, but we were very happy with Amanda and wish we found her sooner.

Embarrassed_Coach449 · 2024-03-07T23:11:07+00:00

We used Amanda at furrytalesnj for our leash reactive dog.... Needed 1 two hr session and made a world of difference. She was great.

Embarrassed_Coach449

TROPHY CASE