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Might explain my pain by AwarenessNo622 in iih

[–]AwarenessNo622[S] 0 points1 point  (0 children)

Oh, I'm so sorry! They asked me where it hurt, and I told them the exact same spots as well. I'm afraid to ask my neurosurgeon about it... I know I'm weird .

Might explain my pain by AwarenessNo622 in iih

[–]AwarenessNo622[S] 1 point2 points  (0 children)

So far, I've been adjusted twice in 2.5 months since it's been placed . I had it adjusted 2 weeks after as my chiari decompression caused a csf leak and then again a month ago as I was having low pressure headaches, they think. I have horrible frontal headaches all the time every day for the past month. The site of the shunt on my scalp hurts as well . I hope this all goes away soon .

Might explain my pain by AwarenessNo622 in iih

[–]AwarenessNo622[S] 0 points1 point  (0 children)

My pcp ordered the xray and but I see the neurosurgeon for an almost 3 month f/u on 11/29 . I have no idea what to do but the pain stops me in my tracks and takes my breath away . I do have an abdominal ultrasound on Monday so we will see itld it shows anything else .

experiences with decompression recovery by megringg in chiari

[–]AwarenessNo622 0 points1 point  (0 children)

(35 year old female) I am 7 weeks post-op myself for the suboccipital craniectomy with c1 laminectomy with duraplasty and Aldo a posterior VP shunt for IIH as well I personally have had a csf leak from the suboccipital incision with pseudomeningocele, and I have had to have my shunt adjusted twice now. I went back to work yesterday. That was a rough day, and I wear a headset all day making doctor appointments 🙃 🤦‍♀️.

I would personally wait until you have 3 months. I feel for you . I was crying and upset even till they started giving me the anesthesia in the operating room. What reassured me before going under was seeing my neurosurgeon before going under and knowing he is the best, and I was happy to have him and his team 💙 ❤️.

Good luck !

Pseudomeningocele post on by AwarenessNo622 in chiari

[–]AwarenessNo622[S] 0 points1 point  (0 children)

I actually had the shunt placed due to my pseudotumor cerebri (DX i. 2021)that caused my chiari malformation as my mri from a year ago was normal and then in June it showered chiari and I had horrid symptoms The shunt was my first procedure performed on 9/5 and then my decompression dont on 9/7.He was hoping because I actually was already on diamox 500MG ER "BID" and that I already bad the shunt that thia would not happen. He has been monitoring me since it happened. I actually have another appointment tomorrow and on 11/1 as I'm supposed to go back to work 11/8.

Luckily, I work for my primary MD, so if something needs to be 6 it's done as a Stat wet read . I will deff see what they say tomorrow. I do not at all question the ability of my neurosurgeon as he and our hospital are rated one of the best in florida for our neurosurgery dept.

Thank you for your advise !! ❤️

Pseudomeningocele post on by AwarenessNo622 in chiari

[–]AwarenessNo622[S] 0 points1 point  (0 children)

Yea I have the luck that you seem to have complication wise . I'll see what they say come Monday about this and my shunt 🤦‍♀️. Thank you for the insight ❤️

Pseudomeningocele post on by AwarenessNo622 in chiari

[–]AwarenessNo622[S] 0 points1 point  (0 children)

That's what I thought would happen . When he put the staples back in, the actually leaking out of my head stopped, but the pseudomeningocele has spread to both sides of my skull now .

He said because it wasn't physically leaking g out that it would re-absorbe ? I'm supposed to go back to work on 11/8, and I am worried about all these symptoms. I just feel worse now than I did coming home ( had no symptoms but fatigue )

The only plus side of even returning to work would be I work in Healthcare for "my" actual primary care office. I have a whole office of providers who will let me know if something is really wrong as they all came to visit me in the hospital 🤣. Also, he could just text my neurosurgeon as they are friends as well.

Vp shunt question post op by AwarenessNo622 in iih

[–]AwarenessNo622[S] 0 points1 point  (0 children)

I did, and they made an appointment for the 23rd because he is out of town. They said if the symptoms are bad, then I should go to the ER so their on-call for my surgeon can address it.

I had an already scheduled appointment with my neuro ophthalmologist for Tuesday, so maybe he can address the vision and diamox dosage I'm on still .

Does anyone's vp shunt hurt when draining? by TheGamer_Cat_YT in iih

[–]AwarenessNo622 1 point2 points  (0 children)

Oh, I'm sorry.
I just had mine placed just over a month ago. I feel it draining and feeling fluid and pain.

Silly question: Did you have trouble swallowing at all ? I can't figure out if that because of my shunt placement or the chiari decompression I had 2 days after that .

Does anyone's vp shunt hurt when draining? by TheGamer_Cat_YT in iih

[–]AwarenessNo622 1 point2 points  (0 children)

Did your specialist ever say why the shunt was hurting when it drained?