I’m sorry that you still have so much pain @carina , when is your follow up with Dr C? Sending you gentle hugs and prayers for healing… 
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Thank you
he wanted to follow-up this week, but didn’t have anything available, so I have a telemed with him next week.
I’m also in the process of getting a second opinion on my CCI imaging, getting evaluated for TOS, and getting genetic testing for connective tissue disorders and microvascular issues. I’ll keep updating as I find out more
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@carina - Post op fatigue is not abnormal. I was very low energy for 2 months after my first ES surgery & for about 6 weeks after my second one & that was w/o IJV decompression. I think it’s part of the way our bodies keep us down so they can put their energy into healing. It may also be a longer term response to the anesthesia & other drugs we get during surgery. I expect that your extreme fatigue will fade over the coming weeks, & you’ll at least get back to your pre-op baseline. I hope as your fatigue dissipates, so will your pain.
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You have alot to deal with, I hope that you can get some answers
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Hello again! Our daughter is now 5 weeks post op and still dealing with high heart rate. She was to see PCP this week and he said I must up her beta blocker to twice a day to lower the heart rate. We are waiting to get in with a new cardiologist since our last one retired suddenly and PCP is very kindly helping us navigate after surgery symptoms until we get to cardiology. He felt this was contributing to her extreme fatigue, shaky episodes even tho’ she is on carbidopa-levodopa, and feelings of heart giving out or not keeping up. This high heart rate is surprising as she has not needed twice a day beta blocker since her abdominal decompression surgery in Germany 13 months ago for MALS, Nutcracker and May-Thurner. After that surgery her POTS meds were reduced to nearly half the dosage. But now she is having a big POTS flare with substantial blood pooling, temperature sensitive (the room temp has to be just right for her or her heart feels weak if too hot and muscles draw up if too cold). Is this normal for after an IJV decompression surgery? Also when upright without back support like when using the restroom she has a very drippy nose which seems to signal a possible CSF leak? I suspect her dura is being traumatized in that position so we found it helps to keep her back supported at all times with a less leaky nose but still drippy.
@joanella123 I feel for you navigating all your sons symptoms and what a load you have trying to decide what next step to take that will bring the biggest results. Our daughter has had two blood patches after tethered cord release. The leaks were cranial leaks so the neurosurgeon felt doing a lumbar blood patch would cover any spot that was leaking, and it did but the 2nd time was not a good success. They were done 6 months apart and by that time we began to wonder what was causing the leaks. Then we pursued the IJV compression diagnosis and found out thru podcasts by Dr. Hepworth and Dr. Centeno that IJV compression and neck instability can both create leaks. Then we had to decide what to pursue the neck instability or neck compression. We found out by a CCI neurosurgeon that the neck instability was not severe enough to create her symptoms so then we pursued with Dr. Hepworth. Our daughter had collected leaks from her nose and had it tested for CSF but was not positive. Don’t waste your money as very rarely does it show positive for CSF… we found out after we had it done! What I am trying to say is that IJV compression creates an overload of blood on the brain and a high histamine response which can put pressure on the dura. Then when someone is on bed rest that puts a load on the spine and dura and can create leaks. There is so much that can play a role into what creates leaks that it can be a huge challenge just to figure out why my child is having a CSF leak!! And why a debilitating headache is happening!!
Prayers for you in your journey!
@Snapple2020 thank you for keeping us updated on your recovery! I hope you can get some relief from those tight neck and shoulder muscles!! Prayers for you!
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I’m sorry that your daughter is experiencing this, I wonder if it’s vagus nerve irritation from the surgery? If so, hopefully this will heal and settle down with time, but it is difficult when there’s overlapping conditions and symptoms , like POTS, to say for sure! I was going to suggest collecting the fluid from her nose to test for CSF, but you answered that, I didn’t realise it’s not that accurate!
Sending you hugs, and praying for your daughter
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I agree with your statement about the challenge to figure out what could be causing a CSF leak when there are a number of variables involved. As we know, it takes time for IJV decompression surgery to work well since post op swelling can temporarily recompress the IJV, I would hope that as your daughter’s swelling subsides, if she has a CSF leak, it might repair itself once the blood flow through her IJV improves.
From what you’ve said, it sure sounds like the liquid coming from your daughter’s nose could be CSF fluid which can have a distinctly metallic flavor. Does she get a metallic taste in her mouth when her nose leaks?
I’m so sorry her recovery is being very challenging & will pray for forward progress to begin in greater earnest very soon.
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Thank you for your prayers! Dr. Hepworth is the one who said that testing CSF from the nose is only 2% of the time positive but we had already had it done and yes it was negative so then of course the doctors were convinced it was not CSF except Dr. Hepworth. I wondered too if vagus nerve irritation has something to do with the POTS flare she is having… our PCP was hopeful her nervous system would calm down after a bit and we just need to give more beta blocker until that happens.
@Isaiah_40_31 I asked if she tastes a metallic taste and no she does not. She has already and knows what that is like but this time when she sits up her headache immediately worsens and her nose starts to drip but the metallic taste is not there. Does that mean it is not CSF? Thank you too for your prayers! We have a telehealth with Sarah Reynolds this week… I am waiting to see what all she has to say.
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@BuckeyePrincess - I just Googled “Does CSF always taste metallic” & this is the answer I got:
For patients with cranial CSF leaks, the most common indicators are:
- Drainage from the nose (rhinorrhea)
- Salty or metallic taste in the mouth
- Sense of drainage down back of throat
- Drainage from the ear (otorrhea)
- Cutaneous sinus tract drainage (CSF leaks into the sinus tract, which then creates a pathway to drain through the skin)
- Loss of sense of smell (anosmia)
- Change in hearing or ringing in the ears
Less frequently, patients with cranial CSF leaks experience cognitive changes.
From that I deduce that the metallic taste isn’t always present. With nose drainage immediately upon sitting up, my first thought was perhaps it’s just sinus drainage since your daughter isn’t upright a whole lot due to sitting up inciting her headache. However, based on the Google reply, it could be CSF. I’m glad you have an appt w/ Sarah R. this week.
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I hope that the telehealth appointment is helpful… Has your daughter ever had sinus issues?
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The appointment went well however we did not discuss the drainage in the back of her throat or out of her nose. The symptoms were not severe enough and my daughter wanted to refrain from mentioning it so we will see how the next weeks go until our in office appointment with Hepworth July 9. She will need an US of the jugulars before the appointment. Also Sarah was thinking we should consider doing labs for thyroid, pituitary gland, feratin, etc. to see if that is why there is extreme fatigue when standing and walking with feelings of heart giving out and rapid heart rate. Sarah thought the high resting heart rate of 95-110 is normal and it will probably drop down as she recovers from the surgery. She would be more concerned if the heart rate was 150. I told her the PCP was concerned and thought it was no wonder my daughter was feeling shaky and fatigued when her heart rate is that high and made sure I knew to up her Metoprolol to am and pm. He said we may need to give it 3x if needed. At this time one week after starting the 2x a day dose the heart rate has not changed much and the blood pressure is holding at normal. Would you agree with Sarah or our PCP? I need advice!
In my humble opinion, though a 95-110 heart rate is on the high side, I think what Sarah said makes sense i.e. give your daughter’s body more time to adjust to the knew level of blood flow in & out of her heart & brain, & for the vagus nerve to heal, to see if her heart rate naturally slows down a bit. I’d think by two months post op, if changes are going to occur, they would be obvious by then. In the meantime, the Metoprolol is helping to keep her BP stable which may be more important than her heart rate since it also seems stable in its current range. Please remember I’m not a doctor so this can’t be considered medical advice.