UPDATE: My Story - Any Thoughts Appreciated

[calluna]

Ketamine, oh my goodness yes, how could we have overlooked that!

I have only had ketamine once, post-op. It was not an infusion, it was just a bolus, and I did not know beforehand that I was going to have it, I just woke up hallucinating away like a good 'un. I knew it had to be ketamine of course and just lay back and enjoyed all the pretty colours - Mandelbrot Sets flying around on the ceiling, very entertaining....

And it was the only time - literally the only time - that I have had no pain whatsoever post-op. Every other time, without exception, my first awareness after surgery has been of horrible overwhelming pain. I'm sure you know about that. This time, none at all, and that lasted until the ketamine wore off.

Ketamine is very, very good at relieving this pain.

If you search for 'ketamine infusion' you will find several threads.

[JMIL]

Violet - Thank you for your kind words of encouragement. My SI Joint Injections are definitely going to be x-ray guided. The SC Joint Injection I had was guided as well. It is very easy for them to find the proper location and I feel much more comfortable knowing they are guided rather than unguided.

Janet - Thank you for reinforcing Violet's comment about guided as opposed to unguided. I completely agree with both of you and would have it no other way.

Violet & Calluna - I have researched ketamine infusions and I actually have that on my list for when I see Dr. Gordin to consult about an intrathecal pain pump. I know he has used the treatment in patients with CRPS, so I'm wondering if it's an option for me. The only downside I've found with my research is the fact it may make my IC severly flare. Althougth as we've said many times what works work one may not work for another and vice versa, so maybe if he considers ketamine an option for me, I'll be fortunate enough not to have any issues with my IC. It'll be interesting to see what his thoughts are.

I actually did have ketamine once before. It was the final time I was hemorrahging in the ER after my hysterecomy and they had to pack me vaginally which at the time was so painful I passed out (it was only six months after my vestibulectomy and I had those defects so having a doctor pack me was more than I could bear). I was given a transfsion of six units of blood because of all I had lost and was literally dying on the bed in the ER. It was an awful time. My husband was by my side the entire time and was watching me die. They gave me ketamine I think to make me not remember what was happening because of all of the pain and trauma, but to this day, other than when I passed out a couple of times, I remember every detail. When my doctor arrived that performed my hysterectomy, she was actually furious they gave it to me?? Anyway, I did have it, but it was under extreme circumstances so it would be a totally different environment to receive it as a treatment now.

I am open to all options. It's just a matter of what Dr. Gordin is willing to do and most important if he is even able to help me. I am most anxious for April 25th to get here!

Thank you all once again!

Jen

[Violet M]

Wow, that's dreadful what you have been through, Jen. Glad you are still with us and that they were able to save you but I hope you will find some relief soon.

Hugs,

Violet

[Jeanne5]

Jen, I just want to say how sorry I am for all of the pain and trouble you're going through. I have pain too, but it feels differently for me. I hope you find relief someday. I offer you now a very big hug!

Jeanne

[JMIL]

Hi Everyone,

I posted an update regarding my SI Joint Injections in another area of the site.

• Board Index
• Diagnosis & Treatments
• Case Updates & Reviews

I’m not sure this was the best place as there were a couple places I thought I could have used. Please let me know if you think it should be elsewhere. I’ll do my best in the future to use the welcome center to let you know where I place future updates. My next update probably won’t be until I have my consultation with a specialist, at the end of the month, regarding an intrathecal pain pump or whatever treatment he feels may help ease my pain.

I’m having a very difficult time with my pain. Thank you all very much for your kind and encouraging words. Those words go a long way when you feel you are at the end of your rope, hanging on for dear life.

I wish you all the best possible day!

Jen

[Violet M]

Jen, Case Updates is a great place to post your progress. I'll head over there and have a look at what you posted. You probably feel like you are proceeding from one therapy to the next until you find one that works but the wait between each one must be agonizing.

Hugs,

Violet

[Meliora]

I read your story with disbelief. I am saddened by all you have endured and still going through. Life is just simply unfair sometimes, but you seem like the type of person who will not let that stop you! Your attitiude seems great and that will get you through this. I admire your persistence in tackling PN. I really think there is reason to have such hope with your upcoming visit with Dr. Gordin. I have read of two ladies online that failed PN surgery, both have pain implants, and both are making real progress.

I am in your situation of cannot leave the house without a driver/back of the car, pain with being in the car, missing my kids activities, life with husband drastically altered. It's very difficult. I too think about the active and happy life I used to lead, I want it back! It's been a snail pace trying to get better, but quitting is not really an option, right!

You deserve some relief and I hope you find it soon....very soon! Thank you for sharing your story and let us know how your upcoming visit goes.

[JMIL]

Meliora,

Thank for your kind and encouraging words. The support I’ve received has been wonderful. This condition makes you feel so alone and isolated, like you are the only one "lying in the back of a vehicle” to get to doctor appointments, missing your kid’s activities, having your relationship with your spouse or partner affected and so on, but then I read or receive posts that reminds me I am not alone.

I am so sorry you are experiencing this too and my heart goes out to you, but it sounds like you are also strong willed and refuse to succumb to a life without hope. There are days when I find it hard to see hope through my pain and I struggle with the ability to stay positive, but realizing I am not alone has been a tremendous help to me.

I send you wishes for the best day possible and my most heartfelt thanks for responding to my post with such compassion. Words of encouragement are powerful and I thank you again for yours.

Take Care,

Jen

[Meliora]

Thank you for your kind words Jen! You are certainly not alone. Yes, there are others laying in the back of cars (I did yesterday in fact.) I sometimes find myself going to the passenger side to sit by hubby (he looks at me oddly and I realize, oh I can't.) A goal of mine is to sit by by my husband in the car!

I hate that you are such pain. I do think the pain pump will help you though, I just do. I will think positive thoughts about that for you!

I appreciate the well wishes for a good day. I am planning to spend time with my oldest today, so the well wishes I will take!

May you also have a good day today and find something that brings you happiness!

[JMIL]

I had my appointment yesterday regarding an intrathecal pain pump and wanted to give everyone an update. My Doctor gave me the go ahead to proceed with the trial phase part of the protocol for the pain pump. The trial phase is when I will find out if the pain pump will help to reduce my pain. During the trial I will spend a few days in the hospital with an epidural placed similarly to how the actual pain pump will be placed (slightly different than the placement of when a woman has an epidural during labor) and medicine will be administered at different ratio’s to find out what level will work best to reduce my pain. My Doctor and his Resident couldn’t have been any kinder or more patient with explaining the process and answering our questions. It was a long and exhausting appointment but we left his office with hope. Although he isn’t making any guarantees the fact he’s willing to proceed tells me he has hope or otherwise he wouldn’t have agreed to proceed. I appreciate his erring on the side of caution and not making false guarantees but at the same time I am thankful he is staying cautiously optimistic. Mark and I are also being realistic in what to expect with the pain pump. We realize the pain pump will not eliminate the source of my pain or cure it but our hopes are it will help me manage my pain better.

Unfortunately, the process still takes time so it is likely I will not begin my trial phase until early July. Waiting seems to be a constant factor in my life so six weeks or so is definitely not an impossible feat for me. During this waiting period my Doctor’s office will work on getting a preauthorization from my insurance company and scheduling a trial date.

I want to thank everyone for all of your support and kind, encouraging words. I have a great deal of confidence this is going to help reduce my pain and look forward to keeping everyone up to date as the process continues!

Jen