RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

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Violet M
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Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related)

Post by Violet M »

Thanks for the update and all of the valuable information.

I have heard a ganglion impar block can be helpful, especially for rectal/coccyx symptoms, but there are also people who have gotten worse, at least temporarily, from ganglion impar blocks. So, you might want to consider waiting to see if you experience more healing over time rather than risking another invasive procedure. It can take months/years for nerves to heal and regenerate.

Hope you will continue to see improvements. ;)

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Med15
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Joined: Fri Feb 02, 2024 6:32 pm

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Med15 »

I was wondering how many million stem cells did you have injected and how many intravenously exactly?

I also wanted to ask how your timeline was of recovery post stem cell treatment? Did you notice most of the improvement in those first two weeks and not much improvement after or was it gradually over the months and improvement little by little every day?
Staypositive
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Joined: Sat Jun 24, 2023 3:43 am

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Staypositive »

It's been hard to track the recovery. It's hard to remember what it felt like before but it doesn't feel like before that's for sure - a bit of numbness or lack of sensation to some degree is there but nothing that worries me much anymore.

The clinic in Dallas said up to 100 million in their email.

The broker BookingHealth prior to booking my treatment in Germany said 50-100 million stem cells at least would be guaranteed and that's just in the email part of the answers to all my questions. They said they were not going to overpromise like other clinics and give false information.

Then while speaking to the German doctor he said the amount of stem cells I would receive could be as high as 500 million - he certainly said it would be much more than 100 million. I have no way to quantify this, I'm just taking their word.

I'm not really sure how this is measured i.e. whether it depends on how much fat/bone marrow they extract. I also remember having to fast in the morning prior to the extraction of blood and fat

Intermittent fasting: Short-term fasting can stimulate the production of new stem cells, as it activates a process called autophagy, which helps to remove damaged cells and promote cellular regeneration.

How long do stem cells last after injection?
After a stem cell therapy procedure, the stem cells injected into the patient will continue to repair in the target area for up to one year.
Last edited by Staypositive on Mon Feb 05, 2024 12:23 am, edited 1 time in total.
Staypositive
Posts: 15
Joined: Sat Jun 24, 2023 3:43 am

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Staypositive »

This is from Bing ChatGPT


The ganglion impar is a bundle of nerves located in front of the sacrum, which is the bony triangle at the base of the spine. It is part of the sympathetic nervous system and controls functions and responses in the anal area, lower part of the urethra, vagina and vulva, scrotum, tailbone, and/or lower area of the rectum 1.

There is some evidence that suggests that the ganglion impar may play a role in sexual function. For example, a study published in the Journal of Sexual Medicine found that patients with chronic pelvic pain syndrome who received a ganglion impar block experienced significant improvement in sexual function 1.

However, more research is needed to fully understand the relationship between the ganglion impar and sexual function. If you have any concerns about your sexual health, I would recommend speaking with a healthcare professional.
cwb125

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related)

Post by cwb125 »

Violet M wrote: Fri Feb 02, 2024 7:51 am Thanks for the update and all of the valuable information.

I have heard a ganglion impar block can be helpful, especially for rectal/coccyx symptoms, but there are also people who have gotten worse, at least temporarily, from ganglion impar blocks. So, you might want to consider waiting to see if you experience more healing over time rather than risking another invasive procedure. It can take months/years for nerves to heal and regenerate.

Hope you will continue to see improvements. ;)

Violet
I had that ganglion impar block done very early on with my issues and it did absolutely nothing positive or negative for me.
Staypositive
Posts: 15
Joined: Sat Jun 24, 2023 3:43 am

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Staypositive »

Hi cwb125,

Sorry to hear.

I wrote this long post with an update and my opinions because I kept getting my questions privately from other users.

For me like I said my only symptom and problem was ED (only ED) no pain, no problem with urination and other stuff that more PN related - instead of neuralgia my issue can be said to be neurolysis.
Complete ED and complete lack of sensation.
Now the complete ED is gone and some of the lack of sensation persists (to what degrees its hard for me to explain it).

I'm not saying I'm right but these are my honest thoughts.

I'm skeptical about dorsal nerve decompression surgery, I'm also intrigued by the impar ganglion but I'm at the same time skeptical about the nerve block. I don't have my results from the MRN and I don't know what the doctor will find or say, but if the nerve block is what Dr.Filler may propose I'll need a lot of information and look into a very carefully because some things don't make sense or I don't understand them yet this is why I said if after getting Dr. Fillers report and diagnosis I still may opt-out from doing anything (I'll always need to way the risks very carefully).

Also if there was any damage anywhere i.e. the dorsal nerve, impar ganglion or any other nerve what I suspect could have worked for me are stem cells they have the capability of healing any type of cell which include nerve and ganglion cells: ''Bone marrow mesenchymal stem cells have been reported as one of the most widely used cell sources for nerve regeneration.''

Other users have told me perhaps things healed a bit for me on their own.
Others that maybe the stem cells work because of the injection at the base of the penis.
Headuphigh
Posts: 1
Joined: Sun Feb 04, 2024 5:58 pm

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Headuphigh »

This thread has been really fascinating, Thank you op.

I actually had a complete suspensory ligament rupture causing some numbness in the base and left side of the shaft. Strangely enough, when engorged, the glans has okay sensation (not full I don't think, but enough). Any idea what nerve innervates the penile base/shaft?

I have had the rupture repaired and given the go ahead by the surgeon to resume sexual activity (he believes the ligament has no role in erectile function and that the nerves should settle in time)

I have been dealing with erectile dysfunction since aswell which I find to be the most difficult to deal with.

I find it very difficult to utilise my pelvic floor muscle to initiate an erection and gain that pleasurable feeling. My left side feels almost paralysed.

I was looking into dorsal nerve decompression and have been in contact with professor Aszmann. He suggests the injury to the nerve could be further back considering the pelvic floor weakness.

I have seen a pelvic floor pt recently and he found no obvious dysfunction, perhaps some tenderness in the front left. He also stated it's very difficult to really pin point the superficial pelvic floor (bulbo/ischio) so the jury may still be out on that.

I'm looking into an MRI scan. Does anyone have any suggestions going forward? I'm in the UK

Ps. Sorry to piggy back on the thread, I'm actually not quite sure how to start my own issue 😂

But in the meantime

Keeping my headuphigh
Staypositive
Posts: 15
Joined: Sat Jun 24, 2023 3:43 am

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Staypositive »

Another user privately told me that the MRN he did with Dr. Filler was very useful in identifying what issues he could have.
He has not been able to resolve the issue which is complicated and medical procedures are extremely expensive.
I'd start with an MR Neurography: https://queensquare.com/services/mr-neurography/
Once you have it done in the UK it might help identify the root of the problem (but there is no guarantee) and then you always approach another physician (specialist) for a second opinion.
cwb125

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by cwb125 »

Staypositive wrote: Sun Feb 04, 2024 1:33 pm Hi cwb125,

Sorry to hear.

I wrote this long post with an update and my opinions because I kept getting my questions privately from other users.

For me like I said my only symptom and problem was ED (only ED) no pain, no problem with urination and other stuff that more PN related - instead of neuralgia my issue can be said to be neurolysis.
Complete ED and complete lack of sensation.
Now the complete ED is gone and some of the lack of sensation persists (to what degrees its hard for me to explain it).

I'm not saying I'm right but these are my honest thoughts.

I'm skeptical about dorsal nerve decompression surgery, I'm also intrigued by the impar ganglion but I'm at the same time skeptical about the nerve block. I don't have my results from the MRN and I don't know what the doctor will find or say, but if the nerve block is what Dr.Filler may propose I'll need a lot of information and look into a very carefully because some things don't make sense or I don't understand them yet this is why I said if after getting Dr. Fillers report and diagnosis I still may opt-out from doing anything (I'll always need to way the risks very carefully).

Also if there was any damage anywhere i.e. the dorsal nerve, impar ganglion or any other nerve what I suspect could have worked for me are stem cells they have the capability of healing any type of cell which include nerve and ganglion cells: ''Bone marrow mesenchymal stem cells have been reported as one of the most widely used cell sources for nerve regeneration.''

Other users have told me perhaps things healed a bit for me on their own.
Others that maybe the stem cells work because of the injection at the base of the penis.
I may not even have PN if the imaging is correct, so take this opinion with a grain of salt, but my point was I do not think a shot is going to make you make the condition so much worse for you that you should not even try a shot, like the ganglion impar.
Staypositive
Posts: 15
Joined: Sat Jun 24, 2023 3:43 am

Re: RECENT UPDATE 01 FEB 2024 Loss sensation penile glans overnight (Dorsal nerve related) Success from Stem Cells?

Post by Staypositive »

Thanks! I'm pretty sure I wouldn't to the impar ganglion block - but I really wanted to hear back regarding my MRN asap.
I'm also not sure what exactly happened to me its quite possible nothing to do with PN or dorsal nerves whatever my issues was the stem cell healed some of that.
I'm continuing to explore things (different doctors, different tests and different theories). I will provide some updates when and if I have them.
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