Recent Posts

Pages: 1 2 [3] 4 5 ... 10
21
Post-Treatment / Re: Follow Up MRI
« Last post by v357139 on April 24, 2024, 07:25:41 pm »
Hi Donna.  Schwartz is the best isn't he?  I almost went with him and Friedman until Friedman left House.  They were both very generous with their time.  I'll take a look in my records, not sure I have much on regrowth.  You might try simply googling Acoustic Neuroma Regrowth.  Sites like Medline and NCBI are very accessible.

Here's one I found quickly:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4899411/

As I recall, the term near-total resection may not always be that well defined, as opposed to gross or total resection.  Glad to discuss further if you like.
22
Post-Treatment / Re: Refusal of Local MD to Treat me Post Op
« Last post by DanFouratt on April 24, 2024, 05:56:14 pm »
I choose to change follow up doctors. I had no problem finding people to follow up with.  I would reach out to some other doctors.  Will USCD follow up?  local MRI and then a phone call? I would forget about the one who was just wrong about the way they treated you and move on.

good luck,
Dan

23
Post-Treatment / Re: Follow Up MRI
« Last post by DZ on April 24, 2024, 11:31:30 am »
That is wonderful!  Congratulations!!!   Glad to hear after 13 years!!  Lucky 13!!  I am only about two years post op (8/18/2022 Friedman/Schwartz UCSD) and a remnant was also left to protect the facial nerve.  I was back doing routine things almost immediately post op! I feel very lucky. I would love to see any references/papers that have been published about regrowth that you have /recommend.  How can I get?   thanks! Donna
24
Post-Treatment / Refusal of Local MD to Treat me Post Op
« Last post by DZ on April 24, 2024, 11:25:17 am »
Hi Everyone - 
Just wanted to get some advice from my fellow patients as I am shocked and upset. 

I went to see a local Otorhinolaryngologist (Penn Medicine Radnor, Wayne Pennsylvania) who was recommended by another Penn Medicine physician.  I recently moved to Pennsylvania so needed to establish new care.  Despite me telling their staff when I made the appointment (and had to wait a month) that I had AN surgery and was there for a follow-up MRI order Dr. Ruckenstein refused to examine me, refused to order anything and proceeded to lecture me about how it is unethical for him to do anything because he did not perform the surgery himself. 

I had an AN translab procedure almost two years ago by Drs. Friedman/Schwartz at UCSD and received excellent care and very happy to have traveled to UCSD.   Has anyone experienced this as well?  (My MD from NJ had no problem providing follow-up care but is retired now).  Any one have a similar experience?  Any suggestions about finding someone else?
25
Radiation / Radiosurgery / Re: Boston
« Last post by v357139 on April 23, 2024, 06:31:54 pm »
Thanks all I will pass it along.
26
Radiation / Radiosurgery / Re: Boston
« Last post by DanFouratt on April 23, 2024, 04:57:52 pm »
Radiation is a "simple" process.  I was one and done, other take a few treatments.  Regardless, both are a sort time in overall commitment.  You may want to open up your search territory. 

Good Luck in your decision journey.

Dan
27
Radiation / Radiosurgery / Re: Boston
« Last post by skier on April 23, 2024, 06:20:52 am »
Hi,
I'm in New England, and when first diagnosed in Oct 2021, I spent some time trying to find radiosurgery options and expertise in the Boston area.

If the searcher looks back at my oldest posts, they will see a few comments from others when I asked for recommendations, but I never got very much direct advice on current options.

Ultimately, I wanted surgery for a fast-growing tumor in fall 2023, and I went to UCSD for the quality of care and expertise. Happy about that decision for myself.

I did read on the discussion board that Tufts in Boston area had expertise in Gammaknife radiosurgery and in surgery. That was where I was leaning towards. Searching on "tufts" or "carl heilman" here shows a lot of very positive comments. Tufts Acoustic Neuroma team had a fairly simple route to a consult, based on their website. (I didn't have a consult myself, so that's all I know.)

Dr. Carl Heilman: https://www.tuftsmedicine.org/doctor/carl-heilman
Gamma Knife: https://www.tuftsmedicine.org/services-treatments/neurosurgery/gamma-knife-surgery#conditions

Hope this is a little helpful.
Best,
Skier
28
Radiation / Radiosurgery / Boston
« Last post by v357139 on April 22, 2024, 08:38:22 pm »
Hi all.  I have someone looking for radiosurgeons in the Boston area.  Does anyone have a name?  Preferably someone well known for this or who they had a good result with.  Thanks.
29
Inquiries / Re: Choosing/Interviewing Radiologists
« Last post by v357139 on April 22, 2024, 08:29:26 pm »
I don't see a support group in Boston,  I see support groups in Rhode Island, Lebanon NH, New Haven CT, and Albany NY.  Are you close to any of them?
30
Inquiries / Re: Choosing/Interviewing Radiologists
« Last post by v357139 on April 22, 2024, 08:18:45 pm »
One last one up there in Boston.  One way is to just call and ask for who the most experienced doctor practicing radiosurgery for acoustic neuroma.

https://www.tuftsmedicine.org/services-treatments/neurosurgery/gamma-knife-surgery#doctors

Also, there is probably an acoustic neuroma support group in Boston.  People in that group will most likely be able to refer you to specific doctors.  They are on the ANA site somewhere.  I'll see if I can find.
Pages: 1 2 [3] 4 5 ... 10