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Potsie Gets Surgery


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I haven't been on the forum in awhile because I've been a mess, but I remember when I was on here there were a lot of questions people had about having surgery with pots. Since I just had major surgery April 9th, I thought I'd share my experience for those of you who are interested. It's long, so quit while you're ahead if you're not interested. :)

I herniated a disc in my lumbar spine in December doing yoga and the hernia ended up right on top of the root where the spinal nerves exit for the right leg. I was in excruciating, agonizing pain. I was on crutches and, near the end, a wheelchair, on massive doses of narcotics to survive the day, and basically curled up in the fetal position for three months on and off. Doctors kept delaying surgery because of my POTS; they thought it was too risky.

In March I went to see my neurologist, Goodman, at Mayo Scottsdale and I was in with a neurosurgeon on Thursday, scheduled for pre-op on Monday, and in surgery on Tuesday. They decided the pots risks were outweighed by the damage being done by the nerve compression, so off I went. There is a lot more to the story, but I'll try and be brief. The highlights, for those interested:

1) My doctors decided it was safest to do the surgery at Mayo where they understood my pots. This was following a scare during an epidural steroid injection I had in my hometown . The anesthesiologist who did the shots was wonderful; he listened carefully as I explained pots, wasn't dismissive, and did the best he could. However, he didn't administer a sedative because my bp was very low (as it usually is) when I went in and he was afraid it would make it worse. Mid procedure, my bp jumped from 78/50 to 117/100, where it stayed. Rather than administering a sedative, he continued with the procedure, while my pulse pressure remained far too narrow for my neurologist's comfort. Later he said he just didn't know what to do. That didn't help Dr. Goodman's perception at all. Nor, for the record, did it help mine. For the second round of shots, I opted not to get the sedative but, per my doc's suggestion, I took extra bbs and monitored my own bp throughout the procedure so I would know when to make adjustments if necessary (I just had them turn the machine toward me). It stayed reasonable (I have very hyper hyper pots and those shots are very painful, so I know that was what put me into that territory the first time).

2) I underwent general anesthesia. It went fine except that my pulse dropped in the 20s during surgery. It was 30 when I woke up. The recovery room staff gave me lots of fluids, monitored me closely, and left me alone. As soon as I was able they got me upright. I jokingly said "wait and see...when I stand it will be 125." It wasn't; they sent me home when it got to 47. Again, a pots thing I often suffer from and I long ago quit worrying about brady bc I'm either tachy or brady, never normal.

3) My doctor said because I have pots and mast cell issues, there's a greater than 50% chance that I will have a severe relapse of POTS, for which I would be put on prednisone to try and stop it in its tracks. So far, that hasn't happened. I'm not great, but I'm about where I was before I was exercising like a madwoman, so I know I'll get back as long as my immune system doesn't have any nasty surprises in store for me.

4) Oxycodone causes tachycardia (like I've NEVER experienced--resting hr was 100+, with standing at 165 constantly) and severe withdrawals, which really really suck when you have pots. I lost 12 pounds in 5 days and I still can't eat most of what's offered. Between the antibiotics and the narcotics, plus my already potsie GI tract, I'll be surprised if I can ever eat again without nausea. I was on a mostly plant-based diet for 6 months prior to surgery, having meat only once a week, at the insistence of my nutritionist; when I see a veggie burger now I have to leave the room. Just...NO.

Overall, it was absolutely worth it to get the surgery because I'm off meds, out of pain, and much happier. However, I would do serious shopping for a surgeon because if something goes wrong I know firsthand that they may just flail. If I had to go under again i would, but I have spent a lot of time explaining to my husband and my GP exactly how to manage my care, as best I can, so that if an emergency arises I will have the best chance of not getting treated in a dangerous manner. If it wasn't an emergency, I would certainly go back to mayo because they have helped manage my disorder better than anyone. Dr. Lyons, the chief of neurosurgery there, did my back surgery. He was a NICE surgeon! I didn't know they existed.

Sorry if this was too long and/or completely useless, but I did warn you. :)

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Good to see you are doing better! It was pretty rough there for awhile. Glad the pain is better most of all.


Thanks for sharing your experience. Good to know!

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thank you, that was interesting. also, 23&me can possibly tell you what you are intolerant of, for example it showed the blood thinner walfarin, i need to warn my dr.s about as i am "not tolerant". (in case I need surgury) so happy you are so strong and pulled thru. Wow, all cuz of yoga? do you have eds may I ask? I plan on starting yoga again and i was wondering how you got herniated disc? I am betting overexertion? but if not, than what?

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Thanks for sharing your story Potsie. I'll be having back surgery end of june due to a herniated disc (I've had it for years but can't get rid of the pain since last september no matter what I tried). As I have lots and lots of trouble on general anesthetics (very low bp like you, racing hr, lots of difficulty waking up, severe vomiting and excruciating headache) the procedure will be done by epiudral. Unfortunately they can't give me a light snooze as you need to be bend forward which makes it difficult to control heart rate (I was told). I'm not looking forward to it at all, but I def need to get rid of the pain.

I'm glad your pain is better and hope you will recover soon Potsie, and again, thanks for sharing your experience!

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This is a good warning for all of us. My son had a wild ride with general anesthesia about 9 months ago. So heed the warning. Glad you are feeling so much better.

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Thanks so much for all of the well-wishes! Angela--it's difficult for the docs to really say what causes a herniation when the onset is slow, but in my case they are pretty sure it was yoga because of the nature of the herniation (up and out, rather than just down). Doc said that's hard to do in the course of normal activity, and asked immediately if I do yoga because he's seen similar herniations in those who do. I'm not sure why some herniated and others don't. I don't have an eds diagnosis, but I did have lunch with chaos who seemed to think I had some hypermobility, and this is the second issue I've had (lost sensation in my right thumb last year bc of a tendon issue).

Corina I wish you much luck. Pain is the worst. I hope they resolve your issues safely. I asked about an epidural but they said they couldn't do it bc of the location of the injury. I didn't pursue what exactly that meant.

My physical therapist doesn't know what to do with me. Just about everything that "should" correlate with my injury as far as flexibility etc. doesn't. I am dropping my foot when I walk, typical of this, but stuff that should cause me pain doesn't and stuff that shouldn't does. I don't know if that's the pots or possible eds or what, but she says I'm just wired differently than anyone else she's had before. Lucky me. :)

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Thank you so much for sharing your experience. What a terrible thing to have to go through. Wow, all from engaging in an activity that is supposed to be helpful. I was doing yoga for a while but after having the flu I have never quite recovered enough to go back to it. Makes me think twice now about whether or not it's worth it. I do have a friend that suffered a shoulder injury doing yoga. I'm so glad you're doing better and recovering.

On a different note, I really want to thank you for information you posted quite a while back regarding abdominal binders. I decided maybe I should give one a try as I seem to have a lot of abdominal pooling especially after meals. I ordered one of the Gabriella binders you had recommended. Wearing it has helped sooo much I dont like to take it off.

.

Thanks again and best wishes for a speedy recovery.

Janet

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So sorry to hear of the trauma you have gone through. I hope that you will have a speedy recovery.

It is scary when docs don't know what to do about POTS. I had a whole bunch of surgeries before getting my DX with POTS and on two of them I was almost lost. The doctors and anesthesiologist were beside themselves. The nurse would not let me sleep. If I'd doze off she'd wake me up. It sure wasn't fun. But, the last surgery I had, the doc did a quick google read, and since it was an emergency surgery ---somehow, they got me through it okay. They over medicated me and I had a hard time getting my bearings after the fact. But, nothing serious happened. Glad you came through with not too much trouble and hope that you are well on the road to recovery.

I would look into the EDS thing - especially with the MCAS DX. Seems we are all falling into the same category with the trilogy.

Thanks for telling us about your experience.

Issie

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Hi NMPotsie. I hope this post finds you continuing along the path of a positive recovery. Again I am so sorry to hear of all you have gone through. In regards to potsies having sedation there was something else that came to mind that I found immensely helpful that I would like to share. I have a history of horrible prolonged dizzines, nausea and vomiting after sedation. A few months back I required sedation ( Versed ) for a procedure so I prepared for the worse but this time I was given Reglan and lots of extra fluid before and after the procedure and amazingly I tolerated the sedation without any problems. I knew to request lots of extra IV fluids but I hadnt thought about Reglan before which used to be commonly given for general anesthesia. I hope this information might be useful for someone else with poor sedation tolerance.

Janet

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Hi Corina. You're welcome. I am so thankful for what others have shared and continue to share. I have learned much. That's what makes this forum so wonderful. I'm so sorry you may have to undergo gallgladder surgery.

Janet

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Hi NM

Thank you too for letting us all know how you got on with surgery, you must have been through some tough times and felt pretty awful i can imagine, like you would never get better!!

I could be looking at surgery this year so its really helpful to hear other potise stories. I know when i was 19 i had surgery to remove my appendix and my blood pressure after surgery was very very low, the nurses where running around and panicing, this was before my POTS dx, but of course NOW i know why it did it!!!

Its strange but Codeine, makes my tachy better!!! I have no idea why as so many drugs makes my tachy worse, but there you go we are all different.

Keep posistive and hang in there.

I am always telling people how Ketotifen (although i am in the UK so can get it) allowed me to eat solid food, after 2 years of living on sugar drinks purely for energy becuase i was so scared to eat as the nausea and vommiting were just awful. Its a med i would say to people worked wonders for my GI symptoms.

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Thanks for that info janet. The sedative they were going to give me for the shots was Versed, but they didn't because of those concerns over bp. It may have been good that I didn't get it even though I had the narrow pulse pressure scare.

I am so sorry to those of you having to consider surgery. It is a scary proposition both with pots and with the possibility that it could cause a severe relapse. I'm glad I did it now but I was terrified. So far my pots is staying pretty stable and I'm very thankful for that. I also have a history of mrsa acquired from the hospital and my incision has healed well and without infection. I think this is solely due o my nutritionist Dr. Berkson who has worked to get my immune system on track. My neuro is even interested in some of his recommendations because my immune system was such a disaster and is recovering so nicely and quickly.

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