Happy new year, good evening.
C4/5 injury, Suprapubic catheter
C4/5 injury, Suprapubic catheter
Simply put , it feels like my penis is being cut open from the inside out 24/7, please help.
This has been going on for a year or two at least. I am losing my mind.
I have posted about this issue before, however it is still going on and is very significant.
I have significant pain in my genitals, in the distal half of my penis. This is driving me INSANE and I donβt know what to do. Feels like I have barbed wire inside my urethra, Burning pain, hard to describe, like broken glass , like my penis is being cut Open from the inside out. Mostly happens when laying down at night, and in the morning after laying all night. Much less significant during the daytime, when sitting up.
I really need help and I would really appreciate it if anyone can offer suggestions. SCI-Nurse Thank you for commenting on this before, I would sincerely appreciate another
1.
This is not seem UTI related. I have started taking 1 million supplements and done everything to rule out UTI and it really does not seem related.
2.
The suprapubic catheter itself could be causing physical irritation to the inside of the bladder wall. I have been trying to verify this and/or rule it for a long time. It seems like this could be at least a contributing factor. Especially positioning seems to make things worse is worse. For instance when I lean very far forward like Iβm trying to touch my toes it does hurt more.
- My urologist and I did some testing to see if it could be mechanical irritation from the catheter rubbing the inside of the bladder . She did urodynamics testing and pumped the bladder full of water with lidocaine in it. This seemed to help somewhat . Theoretically if the wind canβt help that means that there is an injury to the interior of the bladder wall.
- Iβm trying to switch over to intermittent catheterization, however I do not have a good enough hand function to do that myself yet and I do not have reliable enough PCA coverage to help me with that.
- My physiatrist thought that this pain may be caused by referred pain from the sphincter muscle at the bladder neck and suggested Botox injections into the sphincter muscle of the bladder.
I asked him if they still cost me to leak urine out the urethra, especially if Iβm transitioning over to intermittent catheterization. He said this would not happenβ¦ I am still not sure if he is correct about that
- I have previously had Botox injections in the bladder vesicle/muscle in general.
- Someone previously suggested having retrograde cystoscopy in the urethra to view the urethra for damage?
3.
The third question is whether this could be neuropathic/ neurogenic pain. It certainly possible. I would rather it was an easier answer than this. The pain is somewhat similar to what I feel in my toes and my feet, different because of where it is. There are certainly more nerve endings in my dick than the sides of my calves. So therefore perhaps this country correct. If this is the cause, what is the answer? What is the best thing I can do?
I am going to try to order lots of different supplements and that kind of thing.
I have tried switching medication for neuropathic pain from gabapentin to lyrica. 600Mg gabapentin three times per day switching to 100 mg Lyrica three times per day. I also take baclofen 20 mg three times per day. I am currently maxed out on Tylenol and ibuprofen. 1000 mg Tylenol three times per day, 800 mg Ibuprofen twice per day
These things are not good for my liver and my stomach.
I donβt really want to go out much higher on the neuropathic pain medication because I donβt want to get used to that dosage and have the pain come back, then rinse and repeat with nowhere to go eventually
4.
I am trying to try the Dr. Wise young off-label lithium course of treatment for neuropathic pain from the study done in china, showing that lithium can decrease high-level significant neuropathic pain after a six week course (1), however it is difficult to get my physiatrist to prescribe this as an off label treatment. I have inquired to SCINET , Jim sent me an email with more information to send to him, stating that βIn fact, doctors at Shepherd Center in Atlanta are prescribing it regularly.β, however my doctor is doing everything possible to drag his heels. He said he does not Think that he feels comfortable prescribing it because he is not well trained enough to monitor the levels in the blood as it is necessary. I got the office of psychiatry at the Massachusetts General Hospital to agree to monitor my blood levels if another doctor were to write the prescription, they said they would not prescribe this themselves. He is still dragging his heels, says that my primary care doctor would probably be better suited for this.
Off labeled prescription of a medication seems to be a very common thing, one source stating that βTwenty-one percent of all prescriptions written by American doctors, exercising their medical judgment, are for off-label uses.β (2)
So almost a quarter of all medication as prescribed off label. Additionally, lithium seems to be very safe drug β [it is estimated that] manic depression affects about 3% of the population and about half of people who have manic depression take lithium. If true, this suggests that as many 4 million people in the United States are taking lithium. Many people have taken lithium for a lifetime. So, for people who tolerate lithium, it appears to be a safe drug. β (3)
My physiatrist doctor at Spaulding in Boston, the #2 or #3 of the top rehabilitation hospitals in the country seems to think that the results that Dr. Young has achieved are βquack scienceβ, not only this study but also the walking rehabilitation clinical trials. He has expressed similar sentiments to me on multiple occasions, saying that dr. Young has never really had a successful trial and the results that he has gotten so far donβt really mean anything, whenever I bring the walking rehabilitation trial, he says βyeah, yeah, that study again, it has never amounted to anything, and itβs sort of pie in the skyβ - like an urban legend or snake oil.
My doctors short little bio on the hospital website reads:
Dr. Ryan Solinsky-
βFollowing residency, he gained further specialty training through a fellowship in Spinal Cord Injury Medicine at Kessler Institute for Rehabilitation/Rutgers New Jersey Medical School. β
https://spauldingrehab.org/physician/1014/ryan-solinsky
Disappointing that somebody who has done a fellowship with Rutgers medical school would think this way about Keck Center for Collaborative Neuroscience & Dr. young
Now, he is the best doctor that I have ever had to be helping me with this condition, better than all the rest that I have ever had, so he has a lot of other good things about him.
However itβs so disappointing that nobody gives a damn, and actually wants to make an effort to change things.
In closing, it feels like my penis is being cut open from the inside out 24/7, please help.
Iβm going to speak with my primary care doctor about the prescription of lithium. Other than that I donβt know what to do, I am going to start taking CBD and other supplements.
If there are misspellings, my apologies. I am using dictation software.
@RealBShea
(1)
(https://clinicaltrials.gov/ct2/show/...&draw=2&rank=5)
(2)
(SCI NET material)
(3)
(Christopher M. Wittich, et al., Ten common questions (and their answers) about off-label drug use, 87(10), MAYO CLINIC PROCEEDINGS, 982β990, https://doi.org/10.1016/j.mayocp.2012.04.017)
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