Hyperbaric oxygen experiences?

[AllenMarco]

I’ve had intermittent, mostly transient bouts with radiation induced hemorrhagic cystitis for the last 15 years. On 5-6 occasions blood clots have caused obstruction of my urethra, narrowed by the scar tissue from previous Prostatectomy. 3 times I was able to self catheterize a few times (or days) and returned to normal. 3 other occasions I had to have a Foley catheter placed for 7-10 days. Once I had a procedure to try and dilate my urethra. My new urologist is strongly encouraging me to have hyperbaric oxygen. I believe they said 2 hours a day, 5 days a week for 2 weeks. I’m curious about others’ experiences, successes or failures?

[Thesledge]

I had hyperbaric treatment in hopes of helping with incontinence 2 years after receiving radiation. my treatment lasted a total of 3 hours 5 days a week for 40 treatments . I had moderate success, the nurse practitioner that was running the program said I probably should have had 60 treatments but the VA had only authorized the 40.

Give it a try once you get used to “diving “ they are actually a rather enjoyable session . I had to have tubes placed in my ears because I could not equalize the pressure. The first treatment was terrible because of that but after the tube insertion it was a breeze. My treatment amounted to relaxing and taking a nice nap for a few hours each day. Not and unpleasant experience compared to most medical treatments.

[Dog_man]

I am somewhat of a veteran in terms of HBO treatments as I have had 100 treatments over a three year period. The total time for each treatment was about three hours (including start-up and shup down). I had my prostrate removed (2010) then 5 years later had radiation as the PSA was rising again. The radiation scarred my bladder somehow, and as a result I had urinary bleeding and incontinence as a result of the blood coagulation. I required catheter insertion during three or four emergency room visits. My urologist taught me how to use a catheter so I was set up to do that at home and could actually do it better than most of the interns and residents in the ER rooms. However, needless to say, not a desirable long term solution. My urologist then talked me into the HBO treatments. There is a yearly limit as to what Medicare (in the US) will cover, so I stopped after 40 treatments. At the time, I considered those 40 treatments as successful since the bleeding stopped, but alas, I started bleeding again after a few months and went back to getting the HBO treatments. To shorten the story, I wound up getting a total of 100 of the HBO treatments and now consider myself totally "cured" for the past 4 years in terms of bleeding issues. As you might suspect I am suspicious of your urologist's suggestion that "...2 weeks" should take care of your bleeding issue. During my treatments, I got to know 30 or 40 other men in my exact same situation and not a single one indicated that they were cured of their bleeding after 2 weeks.

I did not have any discomfort in terms of the treatments. I did take a decongestant each time and I was offered the option of the tubes in the ears. After visiting with an ENT physician and being tested, we decided that I did not need the tubes. Keep in mind that everyone is a bit different.

The daily treatment process was again, not painful at all. Each facility I used (in FL and GA) had individual chambers for each patient and a TV for each patient (outside the chamber that you could see and hear from inside the chamber) with cable and a huge supply of movie DVDS. I personally caught up on 60 or 70 movies that I had not previously seen while some others took naps as I recall. You cannot have any any type of electrical devices in the chamber with you such as watches, phones, laptops, etc. That is, you will not be catching up on emails or texts.

Good luck to you. Without doubt, I would do it all over again without hesitation. It is a time-consuming process, but as everyone knows on this forum, "..ain't nothing real easy' in this journey that we are all sharing.

[AllenMarco in reply to Dog_man]

Thank you for sharing.

[Teddy28]

I had 20 HBOT sessions summer 2022 to help resolve my radiation cystitis with heavy bleeding and clots. It worked for a few months but then it came back with a vengence, sending me to the hospital 4 times (1 per month). Started HBOT and had 50 more sessions beginning in Jan 2023 and that took care of the problem. But scarring or other issues forced me to have a supra pubic catheter installed so no more bladder ugency and no self catheterization. I cannot hold much urine in the bladder so use a leg bag and overnight bag. Although it sounds awful, it is quite manageable. No leakage from urethra or from the catheter area where it leaves the body. I only had one minor bleed, no clots a few months ago, attributed to intense PT from spinal surgery. Have travleled with no issue, cruise, 500 mile car trips etc. my urologist advised me to take supplements as well as stool softener daily to avoid constipation. d-mannose, hyaluronic acid, collagen peptides. I don't know it is has helped but so far I am thrilled. You need at least 40 sessions preferably more. 2 weeks is not sufficient in my opinion.

[AllenMarco in reply to Teddy28]

Thank you for sharing your experience. Obviously I have mixed feelings but suspect that I have to do something. I was put on strong blood thinners after getting a stent this summer and the bleeding is pretty heavy. My urethra is quite narrow from post Prostatectomy scarring, so in the past I’ve had to self cath to maintain patency. I can’t get anything larger than a 12 Fr catheter past the stricture. I don’t know what’s in store for me but it looks like the hyperbaric oxygen is next.

[Teddy28 in reply to AllenMarco]

Don't wait too long. Cure rate is highest if you do Hbot within 6 months of bleeding inception.

[Juliejet]

It worked great for my husband. He was originally scheduled for 6 weeks 5 day's a week for two hours. When he got to the last week he was still having a little blood yet so they added 3 weeks. Healed him completely! So thankful it was available for him!

[leebeth]

My husband had HBOT 40 sessions with excellent results. He had relief the first week, but happily completed all 40 sessions. He began immediately after retirement and he enjoyed having somewhere to go each morning. He had no complaints about the process whatsoever.

His urologist was reluctant to prescribe, but I pointed out a study that showed best results by starting early after symptoms develop. He didn’t think insurance would approve, but they did.

It was a great experience of a very successful treatment.

[KocoPr in reply to leebeth]

Now that’s being a great caregiver! Good work!

[MyKis]

Hi Allen, I had severe hematuria as a result of EBRT. They could not resolve bleeding , received 4 units of blood and spent 7 wks in hospital with a foley catheter during that time, they finally put me into the Hyperbaric Chamber, went thru 40 , two hour sessions and it fixed it! Im atill thinking why that wasnt introduced in the first place! Highly recommend it !

[Shellhale]

Can be very successful. We bought a home hyperbaric chamber. It's called mild HBOT. It was much easier to do it at home since it requires so much time. The difference is the atmospheric pressures. Mild HBOT is 1.3-1.5 ATA verses 2.5 ATA which is what the hospital uses. You can get the same results however and with less cytokine release. Also less pressure on the ears. Husband had blood in urine and his platelets dropped to 144. Back now to 196. He never got a cytoscopy but suspected radiation cystitis. I am a RRT so I see this alot. Decided to buy a Mild HBOT while he went through radiation and he continues to use it afterwards. He finished on 8/16/24.

[Peppertree602]

I was thinking of getting a home unit for general health. My doctor friend said it is good for general health and inflammation which is bad for cancer cells.

[jjpeabody]

Thanks for the post and all the replies. I assume one or more cystoscopies were involved before and after treatments?

[AllenMarco in reply to jjpeabody]

Multiple cystoscopies and biopsies to confirm radiation induced hemorrhagic cystitis. Most recent urologist was reluctant to try and get past the urethral scar tissue with the cystoscope because I’m on blood thinner post coronary artery stent.

[jjpeabody in reply to AllenMarco]

Thanks for your reply. Good luck

[Kayakbob in reply to AllenMarco]

Just completed hbot dive #36, 4 more to go. I had recurring radiation cystitis, hospitalized 4 times for bladder irrigation over a 5 week period. I was on Plavix and 81mg asprin, would discontinued while flushing, senr home with instructions to restart both. Bleeding would restart in a few days. I decided that it made no sense to use blood thinners while bleeding, cardiologist reluctantly agreed. I started hbot within 2 weeks, seems to have helped, completely clear urine. Also, urologist had bilateral nephrostomy tubes installed to take the strain off bladder. If all goes well, tube's out early January.

[AllenMarco in reply to Kayakbob]

Thank you. I am also on LS aspirin and Brilinta and can’t get thru to my cardiologist for his approval to stop them. But it definitely seems the sensible and right thing to do.

[dk73]

my husband had 8 ER visits, 23 overnight stays, 4 surgeries and 2 blood transfusions for radiation cystitis from September 12 until early November. He started HBOT right after. From closing the chamber to opening it, it took about 90ish minutes. We stayed at a hotel nearby and planned on 4 sessions a week, 40 total (we kept Friday open to keep several dr appts we needed to attend). However after #8, once out of the chamber to get dressed, he became very confused. Didn’t know where he was or why, barely remembered his full name. Two nurses and a doctor were there to witness. So their team got together and decided it was too risky to continue - it takes 7 minutes to bring up out of the dive and open the door and they worried he might get agitated inside the chamber if it happened during treatment. We were disappointed. Now he is doing 6 bladder rescue repair treatments with his urologist

[AlmostnoHope]

It can't hurt you and even if it helps a little it'll be worth it I say.

[AlmostnoHope]

What helped me with my cystitis and it was bad. I was bleeding 8 years after PBRT at the end of every urination and was told I had to live with it. After a horrible cystoscopy I was shown where the bleeding originated and .y bladder was burned from the radiation. Naturopath Doc told me to try slippery elm bark tea. The bleeding stopped. FYI.

[j-o-h-n in reply to AlmostnoHope]

From A I

Slippery elm bark tea is an herbal beverage made from the inner bark of the slippery elm tree (Ulmus rubra), native to North America. It has been used for centuries in traditional medicine, primarily for its soothing properties for the digestive system and its ability to support overall health.

Benefits of Slippery Elm Bark Tea

Digestive Health: Slippery elm is most well-known for its ability to relieve symptoms of digestive discomfort. It contains mucilage, a gel-like substance that forms when the bark is mixed with water. This mucilage helps to soothe the lining of the stomach and intestines, which may aid in conditions like acid reflux, heartburn, irritable bowel syndrome (IBS), or inflammatory bowel diseases (such as Crohn's disease or ulcerative colitis).

Sore Throat Relief: The tea can help soothe a sore throat due to its mucilaginous consistency, providing a coating effect to reduce irritation and inflammation.

Cough Relief: Slippery elm tea may be useful for calming coughs or respiratory irritation. It can help by soothing the mucous membranes in the throat.

Skin Health: When consumed internally, slippery elm is thought to support skin health, though this is more anecdotal. Some people use it topically in poultices to help with skin wounds or conditions.

Anti-inflammatory Properties: Some evidence suggests that slippery elm may have mild anti-inflammatory effects, helping to reduce inflammation in the digestive tract or other areas of the body.

How to Make Slippery Elm Bark Tea

Ingredients:

1 teaspoon of slippery elm powder or dried inner bark

1 cup of hot water

Honey or lemon (optional, for flavor)

Instructions:

Place the slippery elm powder or bark in a mug.

Pour hot water over the powder.

Stir well to mix the powder, as it may clump together initially.

Let it steep for about 5 minutes, stirring occasionally. The tea will take on a slightly thick, gelatinous texture due to the mucilage.

Optional: Add honey or lemon to taste.

Drink the tea while it is still warm for soothing relief.

Possible Side Effects and Precautions

Interaction with Medications: Slippery elm may affect the absorption of certain medications, so it's important to take it at a different time from other medications.

Allergies: While rare, some people might be allergic to slippery elm, leading to symptoms such as rash or itching.

Pregnancy and Breastfeeding: Pregnant or breastfeeding women should consult a healthcare provider before using slippery elm to ensure safety.

As always, it is advisable to check with a healthcare provider before using any herbal remedy, especially if you have underlying health conditions or are on medication.

Good Luck, Good Health and Good Humor.

j-o-h-n

[notso1]

I had HIFU, TURP, 28 radiation treatments, and bladder neck surgery. Radiation cured the Prostate Cancer, and the other procedures were mistakes that set me back. I experienced symptoms that were very similar to yours. I swear by HBOT. I bought one; I haven’t bled or suffered clotting in a long time!

[AllenMarco in reply to notso1]

I doubt that buying one is in my wheelhouse, but out of curiosity what was the cost and source?

[MBOY1]

I’ve been through twice four years apart for radiation cystitis and prostatitis, both conditions covered by Medicare. Post TURP/ Proton Beam radiation caused calcification in prostate. Multiple cystoscopes to try and remove, very sensitive area so difficult. Much inflammation. Was escalated to urinary diversion procedure which I hoped to avoid. As others have mentioned, HBOT is a no brainer, little downside for most and some upsides for many. I’d describe as tedious. The longer you wait the less likely it’ll help. My first time was 30 sessions and positive results came a few months later. This lasted four more years and then had to do another 34. Whomever told you 2 weeks is wrong for your condition. Maybe that would heal a wound or burn. They’ll suggest 35-40 for most effectiveness. Good luck.

[AllenMarco in reply to MBOY1]

Thank you

[Omalley]

I had bleeding and plugging usually when I had stents in, I did 30 HBOT treatments two years ago and no problems since. I agree with everyone else that 10 treatments are not enough. Just as an aside, the TV at my center was tuned to Gunsmoke, after watching over thirty episodes I'm a real Gunsmoke fan.